Disabled Village Children - A Guide for Community Health Workers, Rehabilitation Workers, and Families (Hesperian Foundation, 1999, 676 p.) PART 1: WORKING WITH THE CHILD AND FAMILY: Information on Different Disabilities (introduction...) Chapter 1: Introduction to PART 1: Making Therapy Functional and Fun A. Where Do We Start? Chapter 2: Ideas for Sharing Information from This Book Chapter 3: Prevention of Disabilities Chapter 4: Examining and Evaluating the Disabled Child Chapter 5: Simple Ways to Measure and Record a Child’s Progress B. Recognizing, Helping with, and Preventing Common Disabilities Chapter 6: Guide for Identifying Disabilities Chapter 7: Polio: Infantile Paralysis Chapter 8: Contractures: Limbs That No Longer Straighten Chapter 9: Cerebral Palsy Chapter 10: Muscular Dystrophy: Gradual, Progressive Muscle Loss Chapter 11: Club Feet, Flat Feet, Bow Legs, and Knock-Knees Chapter 12: Common Birth Defects Chapter 13: Children Who Stay Small or Have Weak Bones Chapter 14: Erb’s Palsy: Arm Paralysis from Birth Injury Chapter 15: Painful Joints Chapter 16: Juvenile Arthritis Chapter 17: Rheumatic Fever Chapter 18: Hip Problems Chapter 19: Bone Infections Chapter 20: Spinal Curve and Other Back Deformities Chapter 21: Tuberculosis of the Backbone: Pott’s Disease Chapter 22: Spina Bifida Chapter 23: Spinal Cord Injury Chapter 24: Pressure Sores Chapter 25: Urine and Bowel Management: With Spinal Cord Injury and Spina Bifida Chapter 26: Leprosy: Hansen’s Disease Chapter 27: Amputations Chapter 28: Burns and Burn Deformities Chapter 29: Fits: Epilepsy Chapter 30: Blindness and Difficulty Seeing Chapter 31: Deafness and Communication Chapter 32: Mental Retardation: Down Syndrome, Cretinism, and Other Causes Chapter 33: The Child with Several Severe Disabilities C. Helping the Child Whose Mind and/or Body are Slow to Develop Chapter 34: Child Development and Developmental Delay Chapter 35: Early Stimulation and Development Activities (introduction...) 1) Head Control and Use of Senses 2) Rolling and Twisting 3) Gripping, Reaching, and Hand-eye Coordination 4) Body Control, Sitting, and Balance 5) Creeping and Crawling 6) Standing, Walking, and Balance 7) Communication and Speech 8) Early Play Activities and Toys D. Helping Children Develop and Become More Self-reliant Chapter 36: Feeding Chapter 37: Dressing Chapter 38: Toilet Training Chapter 39: Bathing (includes Care of the Teeth and Gums) Chapter 40: Ways to Improve Learning and Behavior Chapter 41: ‘Learning Disabilities’ in Children with Normal Intelligence E. Exercises and Techniques Chapter 42: Range-of-motion and Other Exercises Chapter 43: Crutch Use, Cane Use, and Wheelchair Transfers

Disabled Village Children - A Guide for Community Health Workers, Rehabilitation Workers, and Families (Hesperian Foundation, 1999, 676 p.)

PART 1: WORKING WITH THE CHILD AND FAMILY: Information on Different Disabilities

Figure

Photo by John Fago

Figure

Photo by John Fago

Chapter 1: Introduction to PART 1: Making Therapy Functional and Fun

Most disabled people in the world live in villages and poor communities where they never see a ‘rehabilitation expert’ or ‘physical therapist’. But this does not always mean that they have no ‘rehabilitation’ or ‘therapy’. In many villages and homes, family members, local craftspersons, traditional healers, and disabled people themselves have figured out ways for persons with disabilities to do things better and move about more easily.

We have seen examples where local carpenters, tinsmiths, leatherworkers or blacksmiths have put together simple crutches, carts, wooden legs and other aids. We know parents who have figured out ways of adapting daily activities so that their children can help do farm work or housework - and at the same time get much of the exercise (therapy) they need.

Two words often used by people who work with disabled persons are ‘rehabilitation’ and ‘therapy’. Rehabilitation means returning of ability, or helping a disabled person to manage better at home and in the community. Therapy basically means treatment. Physical therapy - or physiotherapy-is the art of improving position, movement, strength, balance, and control of the body. Occupational therapy is the art of helping a disabled person learn to do useful or enjoyable activities. We speak of ‘therapy’ as an art rather than a science because there are many different beliefs and approaches, and because the human feeling that goes into therapy is as important as the methods.

Sometimes the ‘rehabilitation’ that families and communities figure out by themselves works better in their situation than do methods or aids introduced by outside professionals. Here are 2 examples:

1. In India, I met a villager who had lost a leg in a house-building accident. Using his imagination, he had made himself an artificial leg with a flexible foot out of strong wire with strips of an old cotton blanket for padding. After several months, he had the chance to go to a city where a professional ‘leg maker’ (prosthetist) made him a costly modern fiberglass leg. The man tried using the new limb for a couple of months, but it was heavy and hot. It did not let his stump breathe like his ‘wire cage’ leg. And he could not squat to eat or do his toilet, as he could with his homemade leg. Finally, he stopped using the costly new leg and went back to the one he had made. For the climate and customs where he lived, it was more appropriate.

All children, as much as possible, should get the exercise they need through daily work and play. (Morocco. Photo by Charles Trieschmann)

2. In a small village in Mexico, over the years, the community together with its deaf citizens has developed a simple but expressive ‘sign language’ using their hands, faces, mouths, and whole bodies to communicate. As a result, children who are born deaf quickly and gracefully learn to express themselves. They are well accepted in the community, and some have grown up to become creative and respected craftspersons. This village method of ‘total communication’ allows the deaf children to learn a useful language more quickly, easily, and effectively than does the ‘lip reading and speech’ method now taught in the cities. For children who are born deaf, attempts to teach only lip-reading-and-spoken-language often end in cruel disappointment. The ‘special educators’ in the cities could learn a lot from these villagers.

Disabled children - if allowed - often show great imagination and energy in figuring out ways to move about, communicate, or get what they need. Much of what they do is, in effect, ‘therapy’, artfully adapted for and by each child.

With a little help, encouragement, and freedom, the disabled child can often become her own best therapist. One thing is certain: she will make sure her therapy is ‘functional’ (useful), always changing it to meet her immediate needs. A disabled child, like other children, instinctively knows that life is to be lived NOW and that her body and her world are there to be explored, used, and challenged. The best therapy is built into everyday activities: play, work, relationship, rest, and adventure.

The challenge, then, for health workers and parents (as well as for therapists), is to look for ways that children can get the ‘therapy’ they need in ways that are easy, interesting, and functional.

This takes imagination and flexibility on the part of all those working with disabled children. But mostly, it takes understanding. When family members clearly understand the reasons for a particular therapy and the basic principles involved, they can find many imaginative ways to do and adapt that therapy.

‘Physical therapy’ to improve control of the head, strength of the back, and use of both arms and hands together:

(a) in a city clinic

Photo: Cheyne Walk Spastic’s Centre

(b) in a village home

Photo: PROJIMO, Ajoya, Mexico

Appropriate therapy helps the child to enjoy himself, be useful, and take part with others, while mastering the skills for daily living.

Physical therapy and rehabilitation techniques have been developed mostly in cities. Yet most of the world’s disabled children live in villages and farms. Their parents are usually very busy growing the food and doing the chores to keep the family fed and alive from day to day. In some ways, this makes home therapy more difficult. But in other ways it provides a wide range of possibilities for exciting therapy in which the child and his family can meet life’s needs together.

Here is a story that tells how therapy can be adapted to village life.

Maricela lives in a small village on a river. She has cerebral palsy. When she was 4 years old, she was just beginning to walk. But her knees bumped together when she tried to take steps. So she did not try often. Also, her arms and hands were weak and did not work very well. Figure Her family saved money and took Maricela to a rehabilitation center in the city. After a long wait, a therapist examined her. He explained that Maricela needed to stretch the muscles on the inner side of her thighs, so her knees would not press together as much. He recommended that her parents do special exercises with her, and that they buy a special plastic seat to hold her knees wide apart. Figure He said she also needed exercises to strengthen and increase the control of her hands and arms. Figure He suggested buying her some special toys, game boards, and aids to practice handling and gripping things. Maricela’s family could not afford these costly things. So back in her village her father used whatever he could find to make similar aids at low cost. First he made a special seat of sticks. Figure Later he made a better seat with pieces of wood, and an old bucket to hold her legs apart. Then, using a board, corn cobs and rings cut from bamboo, he added a small table so that she could play games to develop hand control. Figure Figure He also made a hand exerciser out of bamboo. Figure At first, while they were strange and new, Maricela used her special seat and played with her special toys. But soon, she got bored and stopped using them. She wanted to do the things that other children did. She wanted to go with her father and brother to the cornfield. She wanted to help her mother prepare food and wash the clothes. She wanted to be helpful and grown up. So she broke her special toys and refused - to sit in her special seat. Her parents were furious with her - and she loved it! She would sit for hours with her knees together and her legs bent back. Walking began to get more difficult for her, so she did not walk much. Figure Her parents then visited a small rehabilitation center in a neighboring village. The village team suggested that they look for new ways to help Maricela keep her knees apart and improve control of her arms and hands - ways that would be exciting and help her to develop and practice useful skills together with the rest of her family. Here are some of the ideas that Maricela and her parents came up with: When she was good (and sometimes even if she was not) her father would let her help shell corn with him and the other children. Because she had trouble holding the corn and snapping off the grain with her fingers, her father made a special holder and scraper. Figure The basket between her legs held her knees apart, and the shelling of the corn strengthened her arms, gave her practice gripping, and improved her coordination and control. Figure It was hard, important work that Maricela found she could do. And she loved it! Maricela’s mother sometimes invited her to help wash the clothes at the river. Maricela would sit at the river’s edge with a big ‘washing rock’ between her legs. She would wash the clothes by squeezing and beating them against the rock - just like her mother. Figure The rock kept her knees apart and the squeezing and banging strengthened her hands and improved her control. But what mattered was getting the clothes clean. It was hard work. But she found it easy - and fun! Coming back from the river, Maricela just had to walk. It was too far to crawl. And besides, she had to help her mother carry back the washed clothes. This was hard, but she tried hard, and could - do it! Figure Carrying the pails of clothes helped her learn to walk without bending and jerking her arms so much. To help Maricela grip the handle of the pail easier, her father wrapped a long strip of old bicycle inner tube very tightly around the handle. But when Maricela’s hand sweated, the smooth rubber got slippery. So her father wound a thin rope around the rubber. This way, Maricela could hold it better. Figure As time passed she learned how to carry a bucket of clothes on her head - then a bucket of water. To do this took a lot of practice with balance and control of movement. She just had to keep her legs farther apart to keep her balance. Her mother was almost afraid to let her try carrying the water. But Maricela was stubborn - and she did it! Maricela also discovered that if she floated a gourd dipper (or a big leaf) on top of the water, it helped keep the water from splashing out. Figure So, by trying different things, Maricela’s family, and Maricela herself, learned ways to create therapy and aids that were effective, useful, and enjoyable. Maricela did learn to walk better, and to use her hands and arms to do many things. But this took a long time. Sometimes she would try something that was too hard, and almost give up. But when her little brother would say she could not do it, she would keep trying until she succeeded. Even when Maricela liked doing something, because she was a child she would get bored and not keep doing it for long. Her parents always had to look for new ways for her to get her therapy. It became a challenge and a game for them, too. Of course, Maricela loved horses. So her father made her a rocking horse out of old logs, branches of trees, and a piece of rope for a tail. Figure Her father noticed that she was beginning to walk on tiptoe, so he made special stirrups for the rocking horse. With these, when she rocked, her feet stretched up in a more normal position. Figure The rocking horse kept her knees apart, strengthened her hands, and helped her improve her balance. Maricela loved her horse and sometimes rocked for an hour or more. When she got off, it seemed she could walk better. After Maricela had learned to ride the rocking horse, she wanted to ride the real thing. She begged and begged. So one day her father let her ride with him to the cornfield on his donkey. He suggested she ride in front of him where he could hold her. But she insisted on riding behind, like other children do. So he fixed some stirrups and let her ride behind. Her legs were spread wide and she hung on tightly. It was excellent therapy-but nobody called it that. Figure In the cornfield she helped her father and brother clean the weeds out from among the young corn plants. That was good for the young plants - and for her, too! But after several trips to the cornfield on the donkey with her father, Maricela begged him to let her ride alone. He was nervous, but he let her try. She could do it - and what confidence it gave her! Soon Maricela was preparing lunch for her father and brother and taking it to them in the cornfield - all by herself. Now she found she could do many other things she never thought she could. Although she was still awkward, and at times had to look for special ways to do things, she found she could do most anything she wanted or needed to. Figure

The example of Maricela’s ‘therapy’ cannot and should not be copied - but instead, learned from. In fact, the story suggests that no approach to rehabilitation should be copied exactly. Our challenge is to understand each child’s needs, and then to look for ways to adapt her rehabilitation to both the limitations and possibilities within her family and community. We must always look for ways to make therapy functional and fun.

Recently, some ‘appropriate technology’ groups have tried to adapt standard ‘rehabilitation aids’ to poor rural communities. However, many of their designs are modeled fairly closely after the same old city originals, using bamboo and string instead of plastic and aluminum. Some of these low-cost designs are excellent. But more effort is needed to make use of the unique possibilities for rehabilitation and therapy that exist in the village, farm, or fishing camp.

Maricela’s family did just this. The basket of corn, the washing rock, the rocking horse, and the donkey all became ‘therapy aids’ to help Maricela spread her spastic legs, and at the same time, to take part in the life of her family and community.

But not every family shells corn in baskets, washes clothes on rocks, or has a donkey. And not every disabled child has Maricela’s needs and strengths. So we repeat:

We should encourage each family to observe the specific needs and possibilities of their disabled child, to understand the basic principles of the therapy needed, and then to look for ways to adapt the therapy to the child’s and family’s daily life.

Figure

A. Where Do We Start?

Chapter 2: Ideas for Sharing Information from This Book

Most of the information in this book will be useful to health workers and village rehabilitation workers who see many disabled children. Some of the information will also be useful for the family of a disabled child. However, a family with one disabled child will usually not need, or be able to afford this whole book. It has information about so many different disabilities, that parents may have difficulty finding the information that applies to their child.

Also, learning from a book is often not the best way to learn something. A lot of methods, aids, and exercises can be learned more easily from other persons, through watching and through guided practice. But after a village worker has taught parents how to do certain exercises, or shown them an example of a homemade aid, printed instruction sheets with clear drawings can be a big help. Sometimes they can make the difference between whether the recommendations are followed at home, or not.

There are certain pages or parts of this book that you may want to give to families after you explain and teach to them selected exercises or activities. For example, to the family of a girl with arthritis, you may want to give some of the “Exercise Instruction Sheets” at the end of Chapter 42, and the “Information Sheet on Aspirin”. You may also want to give them pages from Chapter 16 on arthritis, and to mark the exercises and activities that are important to their child.

To the family of a young child who is slow to develop, you may want to give pages from the chapters on child development and early stimulation activities (Chapters 34 and 35). For a more advanced child you could give the family material from the chapters on self-care (Chapters 36 to 39).

Depending on the interest and reading ability of the family, you may want to give them a whole chapter (or chapters) about their child’s disability. For example, the chapters on cerebral palsy (Chapter 9) or deafness (Chapter 31). An older child who is paralyzed from a broken back might appreciate having a copy of the chapter on spinal cord injury. Letting him and his family take home the chapters on pressure sores and urine and bowel control could even save his life! His family may also want to take home plans for making a low-cost wheelchair, to see if the carpenter and blacksmith in their village could make one.

In Project PROJIMO in Mexico, the village rehabilitation team keeps a big file box with copies of the different pages and chapters that they have found most useful for giving to families. (In fact, the exercise sheets at the end of Chapter 42 were originally prepared separately to give to families. Later, we decided to include them in this book.)

Suggestion: Keep a file of pages, chapters, and information sheets to give to families.

Marking the information that applies to the child

On any page or chapter that you give to parents, some of the information or suggestions will apply more than others to their child.

We suggest that you (1) circle the activities or suggestions that would be most helpful to the child in his present condition or level of development. You could also put an “X” through anything that should not be done or might be harmful for that child.(2)

Figure

Here is an example. If the child is spastic and beginning to sit, the first 3 activities can help her to improve balance and to develop controlled body movement. So circle these. The next 3 activities will still be too difficult and could increase spasticity. Put an “X” through these so the family does not do them.

Making copies of pages can be costly. Or you may have to go a long way for them. Also, there will be times when you want to give a family written suggestions or drawings that you have not copied in advance.

Perhaps some of the children or young people who are at the village center, either for rehabilitation or as learners-and-workers, can help trace drawings from the book. If they have some artistic skill, they can make the drawings larger, or make the child in the drawing look like the child that they are to be used with.*

* Ideas for drawing and for copying drawings at larger size are in Helping Health Workers Learn, p. 12-1 to 12-21.

Minerva, a girl with polio who is working and learning at PROJIMO, helps adapt drawings from this book to the needs of specific children.

If someone prepares a set of large drawings in advance, perhaps a disabled child who visits the village center can trace the drawings of exercises he needs to do at home. Giving the child this responsibility from the start makes it more likely that he will do the exercises at home.

If you make your own ‘hand out’ sheets (instead of just copying pages of this book) you can use the local language and villagers’ way of saying things. You can also adapt the drawings to the hair style and dress that people feel ‘at home’ with.

Whatever you do, try to keep both your language and drawings simple and clear. Avoid unfamiliar words.

Also, try to think of ways of adapting exercises or activities to the local situation.

For example, (1) suppose you live in a fishing village, and want to make copies of a drawing showing an aid for strengthening the wrist. Instead of just copying a method like this from a book, (2) you might add a drawing like this one. This will encourage parents to think of ways to do exercises that involve their child in the life and action of their community.

Figure

Figure

Remember: Written pages and drawings can be a big help, but they should not be a substitute for teaching and showing. To help a family understand activities or exercises that are needed:

1. First show and explain.
2. Guide them in doing it until they do it right and understand why.
3. Then, give them the instruction sheet and explain the main points.

These steps are explained with examples and drawings.

As much as you can, try not to use this book for giving exact instructions on how to do things. Instead, encourage everyone to use it as a source of ideas, in order to figure out better ways to help their children lead fuller lives and manage better in their communities.

REMEMBER...

One of the best ways to share information from this book is to:

1. SHOW other people how to do things.

Village rehabilitation workers and family members learn in an outdoor class. Here they practice a hip-stretching exercise. Behind them, drawings on the blackboard show which muscles are stretched.

2. Then help them LEARN BY DOING it themselves - under your guidance.

Teaching a village health worker how to stretch a tight heel cord

3. And to help them remember, give them a DRAWING or INSTRUCTION SHEET.

Figure

IMPORTANT: Try to help people to understand not only what to do, but also why. Perhaps you can hold classes using information from this book. Try to combine hands-on practice with discussion of principles and reasons.

Chapter 3: Prevention of Disabilities

Because this is a book on ‘rehabilitation’, it is mostly about children who are already disabled. However, preventing disabilities is also very important. For this reason, in most chapters on specific disabilities, we include suggestions for preventing them.

Notice that we place the discussion of prevention at the end of each chapter, not at the beginning. This is because people are usually not concerned about disability until someone they love becomes disabled. Then their first concern is to help that person. After we have helped a family to do something for their disabled child, we can interest them in ways to prevent disability in other members of the family and community.

We mention this because when health professionals design community programs, often they try to put prevention first - and find that people do not show much interest. However, when a group of parents comes together to help their disabled children, after their immediate needs are being met, they may work hard for disability prevention.

For a community program to be successful, start with what the people feel is important, and work from there.

To prevent disabilities, we must understand the causes. In most parts of the world, many causes of disability relate to poverty. For example:

· When mothers do not get enough to eat during pregnancy, often their babies are born early or underweight. These babies are much more likely to have cerebral palsy, which is one of the most common severe disabilities. Also, some birth defects are related to poor nutrition during the first months of pregnancy.

· When babies and young children do not get enough to eat, they get infections more easily and more seriously. Diarrhea in a fat baby is usually a mild illness. But in a very thin, malnourished baby, diarrhea often leads to serious dehydration, high fever, and sometimes brain damage with fits or cerebral palsy.

· Poor sanitation and crowded living conditions, together with poor food, make diseases such as tuberculosis - and the severe disabilities it causes - much more common.

· Lack of basic health and rehabilitation services in poor communities makes disabilities more common and more severe. Often secondary disabilities develop that could be prevented with early care.

To prevent the disabilities that result from poverty, big changes are needed in our social order. There needs to be fairer distribution of land, resources, information, and power. Such changes will happen only when the poor find the courage to organize, to work together, and to demand their rights. Disabled persons and their families can become leaders in this process. Only through a more just society can we hope for a long-term, far-reaching answer to the prevention of disabilities caused by poverty.

Although the most complete prevention of disabilities related to poverty depends on social change, this will take time. However, more immediate actions at family, community, and national levels can help prevent some disabilities. For example,

· Polio, in certain situations, can be prevented through vaccination. (However, effective vaccination depends on much more than good vaccine. See the box.)

Why, since a good vaccine exists, is there still so much polio in so many countries? EFFECTIVE VACCINATION DEPENDS ON MANY FACTORS: TECHNICAL Production and supply of safe, effective, vaccine. Figure ECONOMIC (Cost of vaccine and of getting it to the children.) Leaders in poorer countries must decide that stopping polio is worth the expense. Figure MANAGEMENT Knowledge of needs, planning, transportation, and distribution of the vaccine. KEEPING POLIO VACCINE FROZEN (In many countries, 1/3 of vaccines are spoiled by the time they reach the children.) EDUCATION People must understand the value of vaccination and want to cooperate. Health workers must know how important it is to keep polio vaccine frozen. POLITICAL Vaccination programs are most successful where the government fairly represents the people and has their full participation in countrywide vaccination campaigns. ETHICAL (Honesty and good will) Doctors, health workers, and citizens must try to see that vaccine reaches all children. (In some countries, some doctors throw vaccines away and fill out false reports, and health inspectors do not care enough to try to stop what is happening.)

In places where vaccination is not available or not fully effective, families and communities can help to lower the chance of paralysis from polio in other ways:

¨ by breast feeding their children as long as possible.

¨ by not letting their children get unnecessary injections.

· Brain damage and fits can become less frequent if mothers and midwives take added precautions during pregnancy and childbirth, and if they vaccinate children against measles.

· Some birth defects and mental retardation can be prevented if mothers avoid most medicines during pregnancy, and spend the money they save on food.

· Spinal cord injury could be greatly reduced if fathers would spend on education and community safety what they now spend on alcohol and guns.

· Leprosy could mostly be prevented if people would stop fearing and rejecting persons with leprosy. By being more supportive and encouraging early home treatment, the community could help prevent the spread of leprosy, since persons being treated no longer spread it.

· Blindness in young children in some countries is caused by not eating enough foods with vitamin A. Again this relates to poverty. However, many people do not know that they can prevent this blindness by feeding their children dark green leafy vegetables, yellow fruits, or even certain weeds and wild fruit. Also, some kinds of deafness and mental retardation can be prevented by using iodized salt during pregnancy.

· Disability caused by poisons in food, water, air, or workplace. The recent, common, worldwide use of chemicals to kill insects and weeds has become a major health problem. Often villagers use these pesticides without any knowledge of their risks, or of the precautions they should take. As a result, many become paralyzed, blind, or disabled in other ways.

To prevent these problems, people need to learn about the dangers, not only to themselves and their children but to animals, birds, land, and to the whole ‘balance of nature’. Less dangerous ways to control pests give better results over time. Laws are also needed to prohibit the most dangerous products and to provide clear warnings.

TO PROTECT AGAINST PESTICIDE POISONING · Stand so that wind blows spray away from you. · Wear protective clothing, covering the whole body. Figure · Wash whole body and change clothes immediately after spraying. · Wash clothes after spraying. · Do not let wash water get into drinking supply. · Do not use spray containers for food or water. · Do not let children play with spray containers. CAUTION: Make sure that children, and women who are pregnant or breast feeding, stay away from all pesticides.

· Poisonous foods in some areas are a major cause of disability. In parts of India, thousands of farm workers who are paid with a poisonous variety of lentils suffer paralysis from ‘lathyrism’. The poor know the danger but have nothing else to eat. Fair wages and less corruption are needed to correct this situation.

· Fluoride poisoning (fluorosis), mainly from drinking water, is a common cause of bone deformities (knock-knees) in parts of India and other places. Public health measures are needed to provide safe water.*

* Note: Although too much fluoride is harmful, some is necessary for healthy bones and teeth. In some areas fluoride needs to be removed from drinking water; in other areas it needs to be added.

The 4 biggest causes of ‘crippling’ in India, affecting over 2 million people, are reported to be polio, iodine deficiency, fluorosis, and lathyrism. Given the political will, all could be completely prevented!

· Dangerous work conditions, poisons in the air, and lack of basic safety measures result in many disabilities. These include burns, amputations, blindness, and back and head injuries. In some countries, the use of asbestos for roofs or walls in schools, work places, and homes causes disabling lung diseases. Strict public health measures and an informed, organized people are needed to bring improvements.

· Certain dangerous medicines, known to sometimes cause disabilities, are now prohibited in the countries that make them, but are still sold in other countries. For example, diarrhea medicines containing clioquinol caused thousands of cases of blindness and paralysis in Japan. (A good book discussing dangerous medicines in poor countries is Bitter Pills by Dianna Melrose.)

The high cost, overuse, and misuse of medicines in general adds greatly to the amount of poverty and disability in the world today. Better education of both doctors and people, and more effective international laws are needed to bring about more sensible supply and use of medicines.

WHO SHOULD BE RESPONSIBLE FOR DISABILITY PREVENTION

Notice that many of the specific preventive measures we have discussed, just like the more general social measures, depend on increased awareness, community participation, and new ways of looking at things. These changes do not just happen. They require a process of education, organization, and struggle led by those who are most deeply concerned.

Most able-bodied persons are not very concerned about disability or trying to prevent it. Often people think, “Oh, that could never happen to me!” - until it does.

Those who are most concerned about disability are usually disabled persons themselves and their families. Based on this concern, they can become leaders and community educators for disability prevention.

Disability can affect everybody, and sometime in our lives it usually does.

They can do this in an informal, person-to-person way. For example,

Figure

Or disabled children and families can join together to form prevention campaigns. In one village, mothers put on short plays to inform the whole community about the importance of breast feeding and vaccination. In Project PROJIMO, Mexico, disabled rehabilitation workers have helped to vaccinate children in remote mountain villages.

In PART 1 of this book, where we discuss different disabilities, we also include basic information on prevention. We hope that those of you who use this book for children who are already disabled, will also work actively towards disability prevention.

PREVENTING SECONDARY DISABILITIES

So far we have talked mainly about preventing original or ‘primary’ disabilities, such as polio or spinal cord injury. But the prevention of ‘secondary’ disabilities is also very important, and is one of the main concerns of rehabilitation.

By ‘secondary’ disabilities we mean further disabilities or complications that can appear after, and because of, the original disability.

For example, consider a child with polio or cerebral palsy who at first is unable to walk. She gradually loses the normal range-of-motion of joints in her legs. Shortened muscles, called ‘contractures’, keep her legs from straightening. This secondary disability may limit the child’s ability to function or to walk even more than the original paralysis:

This child, after polio, gradually developed contractures in her

The contractures (not the original paralysis) kept her from being able to stand or walk.

If the contractures had been prevented through early and continued range-of-motion exercises, the child would have been able to stand and walk.

Most contractures can be corrected. But it may take a long time and a lot of expense - perhaps even surgery It is far better to: PREVENT CONTRACTURES BEFORE THEY START.

Because contractures develop as a common complication in many disabilities, we discuss them in a separate chapter (Chapter 8). Range-of-motion exercises to help prevent and correct contractures are described in Chapter 42. Use of plaster casts to correct contractures is described in Chapter 59.

Many other secondary disabilities will also develop unless preventive measures are taken. Some examples are pressure sores in children with spinal cord injury (see Chapter 24), spinal curve in a child with a weak back or with one leg shorter than the other (see Chapter 20), head injuries due to fits. Preventive measures for many other secondary disabilities are discussed in the chapters on the specific disabilities.

In several places we discuss problems or disabilities that are commonly caused by medical treatment or orthopedic aids. For example,

· The medicine for fits, phenytoin, produces serious swelling of the gums in some children. This can partly be prevented by brushing the teeth regularly.

· Crutches that press hard under the armpit can damage nerves and gradually paralyze the hands. Shorter crutches, or lower-arm crutches (like those shown above) prevent this problem.

· Surgery is sometimes done to remove contractures that actually help a child to move or function better. So worse difficulties result. The benefits or possible harm of surgery should be carefully evaluated before it is done.

· Some braces or aids that help a child at first, may later actually hold her back.

To prevent these mistakes, it is essential to evaluate the needs of each child carefully, and repeat evaluations periodically. We must take great care to prevent further disability caused by treatment.

The first responsibility of a rehabilitation worker or parent, like the healer, should be to: DO NO HARM

In addition to secondary disabilities that are physical, others may be psychological or social (affecting the child’s mind, behavior, or place in the community).

Some disabled children develop serious behavior problems. This is often because they find their bad behavior brings them more attention and ‘rewards’ than their good behavior. Chapter 40 discusses ways that parents can help prevent tantrums and bad behavior in disabled children.

The biggest secondary handicap for many disabled children (and adults) usually comes from the lack of understanding and acceptance by other people. PART 2 of this book talks about how the community can be involved in taking a more active, supportive role in relating to the disabled and helping them to meet their needs. In PART 2 we also discuss what disabled persons and their families can do, in the community, to promote better understanding and prevent disability from becoming a serious handicap.

Prevention of secondary disability is a basic part of rehabilitation.

THE NEED FOR MORE SENSIBLE AND LIMITED USE OF INJECTIONS

The overuse and misuse of medicines in the world today has become a major cause of health problems and disabilities. This is partly because medicines are so often prescribed or given wrongly (for example, certain medicines taken in pregnancy can cause birth defects). And it is partly because both poor families and poor nations spend a great deal of money on overpriced, unnecessary, or dangerous medicines. The money could be better spent on things that protect their health - such as food, vaccinations, better water, and more appropriate education. Some medicines, of course, when correctly used are of great importance to health. But most are not. Of the 30,000 medicinal products sold in most countries, the World Health Organization says that only about 250 are needed.

In most of the world, doctors, health workers, and the people make giving and getting injections too big a part of health care.

In many countries, injections have become the ‘modern magic’. People demand them because doctors and health workers often prescribe them, and doctors and health workers prescribe them too often because people demand them.

Figure

HOW INJECTIONS DISABLE CHILDREN

Giving injections with an unclean needle or syringe is a common cause of infection. Sometimes these infections can lead to paralysis, or spinal cord injury, or death.

Also, some injected medicines can do harm. Dangerous allergic reactions, poisoning, and deafness are sometimes caused by injecting certain medicines - often when they are not needed.

Overuse by doctors and midwives of injectable hormones to speed up childbirth and ‘give force’ to the mother has become a major cause of babies born with brain damage, cerebral palsy, and fits in many countries.

This child was injected with a needle that was not sterile (clean). The dirty needle caused an infected abscess (pocket of pus) that in time burst and drained. The child had been injected for a cold. It would have been better to give him no medicine at all.

Figure

Figure

The disability most often caused by injections is paralysis from polio. Some experts say that each year up to 2 million children are paralyzed by polio because of injections. Nearly all of these injections are given when they are not needed.

It happens like this. Children who are infected by the polio virus usually only have signs of a bad cold or ‘flu’. Most get well in a few days, without developing paralysis. But the risk of paralysis increases if the child’s muscles are injured or irritated. Injections of any kind of medicine irritate the muscles. Messages from the irritated muscles travel up the nerves to the spinal cord, and cause changes that let the polio virus produce paralysis.

1 out of every 3 cases of paralysis from polio is caused by injections.

Unfortunately, when children develop a cold or ‘flu’ caused by the polio virus, their parents often take them to a doctor or health worker for an injection. Many times the result is paralysis, which is usually worse in the leg on the side that was injected. Many people used to think that paralysis in a leg after an injection was caused because the needle ‘hit a nerve’. We now know that in most cases the paralysis was caused by polio. Because it was brought on or ‘provoked’ by an injection, this is called ‘provocation polio’.

It is very important that mothers - and doctors - remember that children should not be given injections when they have signs of a cold with fever or ‘flu’. It might be polio, and an injection could bring on paralysis.

If injections are given to children only when they are really needed, millions of cases of paralysis from polio could be prevented.

The worldwide epidemic of unnecessary injections each year sickens, kills, or disables millions of persons, especially children. An international campaign is needed to re-educate doctors, health workers, traditional healers (many of whom also now overuse injections), and the people themselves.

Combatting misuse and overuse of medicines is as important a preventive measure as is vaccination, clean water, or the correct use of latrines.

Health workers, schoolteachers, and community organizers should all work to ‘de-mystify’ or take the magic out of injections, and to help people always to weigh the possible risks and benefits before using any medication.

For skits and ideas on teaching people about the danger of unnecessary injections, see Helping Health Workers Learn, Chapters 18, 19, and 27.

Note: When used correctly, certain injected medicines are important to health. Vaccinations, including those that are injected, are very important to protect a child’s health and prevent disability. However, to avoid paralysis from polio, it is best not to give vaccinations (immunizations) or any other injection when a child has a fever or signs of a cold. This could be a mild polio infection, and giving an injection could cause paralysis.

AVOID UNNECESSARY INJECTIONS

WAR AS A CAUSE OF CHILD DISABILITY

Armed violence is increasing. Since 1980, 45 countries have been involved in 40 wars, with over four million soldiers. In today’s wars, more civilians than soldiers are killed or disabled, and most are women and children. In World War One, only 5 percent of persons killed or injured were civilians. Today, 80 to 90 percent are civilians. At least 3 times as many people are injured as are killed.

The increased poverty and ‘hard times’ caused by war also lead to many disabilities. There are 25 to 30 million refugees, many living under dangerous and unhealthy conditions. One-third of the world’s children lack adequate food and basic health care. Millions are homeless. Yet in 1985, world leaders spent 1,000 billion US dollars on war and arms - twice as much as in 1981.

Nicaraguan child disabled by a ‘Contra’ bomb. The Contras are rebel troops supported by the United States Government to overthrow the new government in Nicaragua. (Photo by Marc Krizack, Links)

War, terrorism, and torture have become tools of the powerful for economic, political and social control. When the peoples of poor countries dare to get rid of their dictators and form popular governments that work toward fairer distribution, the rich, powerful countries often try to destroy those new governments. They pay for terrorism, long wars, and the destruction of schools, health centers, and production. The result is still more poverty, disease, and disability.

To help change this situation, we disabled persons of the world must join with all who are disadvantaged or treated unfairly, to struggle for a new, more truly human, world order.

Terrorism is too often fought with terrorism. During the U.S. attack on Libya in April, 1986, bombs hit a school for disabled children. Such actions do not stop terrorism; they merely kill and disable innocent persons. “AN EYE FOR AN EYE WILL MAKE THE WHOLE WORLD BLIND.”-Mahatma Gandhi.

Chapter 4: Examining and Evaluating the Disabled Child

To decide what kind of special help, if any, a disabled child may need, first we need to learn as much as we can about the child. Although we may be concerned about her difficulties, we must always try to look at the whole child. Remember that:

Figure

A child’s abilities are more important than her disabilities.

The aim of rehabilitation is to help the child to function better at home and in the community. So when you examine a child, try to relate all your observations to what the child can do, cannot do, and might be able to do.

What a child is and does depends partly on other persons. So we must also look at the child’s abilities and difficulties in relation to her home, her family, and her village or neighborhood.

To evaluate a child’s needs, try to answer these questions:

· What can the child do and not do? How does this compare with other children the same age in your community?

· What problems does the child have? How and when did they begin? Are they getting better, worse, or are they the same?

· In what ways are the child’s body, mind, senses, or behavior affected? How does each specific problem affect what she does?

· What secondary problems are developing? (Problems that result after and because of the original problem.)

· What is the home situation like? What are the resources and limitations within the family and community that may increase or hold back the child’s possibilities?

· In what way has the child adjusted to her disability, or learned to manage?

To find the answers to these questions, a health or rehabilitation worker needs to do 3 things:

1. Observe the child carefully - including her interaction with the family and with other persons.

2. Take a ‘history’. Ask the parents and child (if old enough) for all information they can provide. Obtain medical records if possible.

3. Examine the child to find out how well and in what way different parts of her body and mind work, how developed they are, and how much they affect her strengths, weaknesses or problems.

BE SURE TO LOOK AT THE WHOLE CHILD - NOT JUST THE DISABILITY

Observation of the child can begin from the first moment the health worker or rehabilitation worker sees the child and her family. It can begin in the waiting area of a village center, the home, or the street, and should continue through the history-taking, examination, and follow-up visits. Therefore, we do not discuss ‘observation’ separately, but include it with these other areas.

It is usually best to ask questions BEFORE beginning to examine the child - so that we have a better idea what to look for. Therefore, we will discuss history-taking and then examination. But first a word about keeping records.

RECORD KEEPING

For a village rehabilitation worker who helps many children, writing notes or records can be important for following their progress. Also, parents of a disabled child may find that keeping simple records gives them a better sense of how their child is doing.

Sample RECORD SHEETS included in this book	RECORD SHEET number
Child history	1
Physical examination	2
Tests of nervous system	3
Factors affecting child development	4
Evaluation of progress	5
Child development chart	6

Six sample RECORD SHEETS are on pages 37 to 41, 50, 292, and 293. You can use these as a guide for getting and recording basic information. But you will want to follow with more detailed questions and examination, depending on what you find.

Sheets 1 and 2 will be useful for most disabled children. Sheets 3, 4, and 6 are for children who may have brain damage or seem slow for their age. Sheet 5 is a simple form for evaluating the progress of children 5 years old or older.

HISTORY TAKING

On pages 37 and 38 you will find a record sheet for taking a child’s history. You can use it as a guide for the kinds of questions it is important to ask. (Of course, some of the questions will apply more to some children than others, so ask only where the information might be helpful.)

When asking questions, we rehabilitation workers must always remember that parents and family are the only real ‘experts’ on their child. They know what she can and cannot do, what she likes and does not like, in what ways she manages well, and where she has difficulties.

However, sometimes part of the parents’ knowledge is hidden. They may not have put all the pieces of knowledge together to form a clear picture of the child’s needs and possibilities. The suggestions in this chapter, and the questions on the RECORD SHEETS, may help both rehabilitation workers and parents to form a clearer picture of their child’s needs and possibilities.

Rehabilitation workers and parents can work together to figure out the child’s needs.

EXAMINING THE DISABLED CHILD

After finding out what we can by asking questions, our next step is to examine the child. In as friendly a way as possible, we carefully observe or test what parts of the child work well, what parts work poorly, and how this affects the child’s ability to do things and respond to the world around him.

CAUTION: Although we sometimes examine separately different aspects of the child’s body and mind, our main purpose is to find out how well the child’s body and mind work together as a whole: what can the child do and not do, and why? This information helps us decide how to help the child to do things better.

In examination of a disabled child, we may check on many things:

· The senses: How well does the child see? hear? feel?

· Movement: How well does the child move or control her movements?

· Form and structure: How well formed, deformed, or damaged are different parts of the body: the joints, the backbone, and skin?

· Mind, brain, and nervous system: How much does the child understand? How well do different parts of the body work together? For example, balance or eye-to-hand coordination.

· Developmental level: How well does the child do things, compared to other local children her age?

In addition, a complete physical examination would include checking the health of systems inside the body. Although this part of the examination, if needed, is usually done by health workers, rehabilitation workers need to know that with certain disabilities inner body systems may also be affected. Depending on the disability, these may include:

the breathing system (respiratory system)

the body’s cleaning system (urinary tract)

the heart and blood system (circulation system)

the food processing system (digestive system)

Rehabilitation workers need to work in close cooperation with health workers.

A detailed examination of all a child’s parts and functions could take hours or days. Fortunately, in most children this is not necessary. Instead, start by observing the child in a general way. Based on the questions you have already asked and your general observations, try to find anything that seems unusual or not quite right. Then examine in detail any body parts or functions that might relate to the disability.

Part of the art of examining a child is KNOWING WHEN TO STOP. It is important to check everything that might help us understand the child’s needs. But it is equally important to win the child’s confidence and friendship. Too much examining and testing can push any child to the point of fear and anger. Some children reach their limit long before others. So we must learn how much each child can take - and try to examine the child in ways that she accepts.

Some children require a much more complete examination than others. For example:

Juan lost one hand in an accident 2 years ago, but otherwise seems normal. Probably he will need little or no physical examination other than to see how he uses his arms, stump, and hand. You will also want to check how much he can do with his other hand, with only his stump, and when using both together. Figure The Physical Examination Form (RECORD SHEET 2) is probably the only examination form you need to fill out. However, it would be wise to learn about how Juan’s family and others treat him now, and how he feels about himself and his ability to do things. Does he keep his stump hidden when he is with strangers? With family members? What are his hopes and fears? You can write this information on the back of the form.

Ana is 2 years old and still does not sit by herself. She has strange uncontrolled movements. She does not play with toys or respond much to her parents. Figure Ana seems to have many problems. We will need to check: · how well she sees and hears. · how strong, weak, or stiff different parts of her body are. · in what ways her development is slow (what she can do and not do). · how much she understands. · signs of brain damage, and how severe. · her sense of balance and position. · what positioning or support gives her better control and function. It may take weeks or months of repeated examining and testing to figure out all of Ana’s difficulties, and how to best help her to function better. It could be a mistake to try to do all the needed examining at one time. To record all the useful information on a child like Ana, you will find RECORD SHEETS 1, 2, 3, 4, and 6 helpful.

Examining techniques: Winning the child’s confidence

Depending on how you go about it, the physical examination can help you become a child’s friend or turn you into his enemy. Here are a few suggestions:

· Dress as one of the people, not as a professional. White uniforms often scare a child - especially if at some time he was injected by a nurse or doctor.

· Before starting the examination, take an interest in the child as a person. Speak to him in a gentle, friendly way. Help him relax. Touch him in ways that show you are a friend.

· Approach the child from the same height, not from above. (Try to have your head at the same level as his.)

· Start the examination with the child sitting or lying on mother’s lap, on the floor, or wherever he feels most safe and comfortable.

Figure

· If the child seems nervous about a stranger touching or examining her, have the parent do as much of it for you as possible. This will let the mother know that you respect and want to include her. And she may learn more.

Figure

· Make the waiting area and place where you do the examining as pleasant and as much like home as you can. Have lots of toys, from very simple to complex, where the children can choose and play with them. By watching if, how, for how long, with what, and with whom a child plays, you can learn a lot about what a child can and cannot do, his level of physical and mental development, the types of problems he has, and the ways he has (or has not yet) adapted to them.

Figure

Watching how a child plays - by herself, with people, and with toys - is an essential part of evaluating the child.

· Try to make the examination interesting and fun for the child. Turn it into a game whenever possible. For example:

When you want to test a child’s ‘eye-to-hand coordination’ (for possible balance problems or brain damage) you might make a game out of having the child touch the nose of a doll. Or have her turn on a flashlight (torch) by pushing its button

Figure

Also, when he begins to get restless, stop examining for a while and play with him, or let him rest.

It is best to examine a child when he is well-rested, well-fed, and in a ‘good mood’ - and when you are, too. (We know this will not always be possible.)

· When a child is weaker or has less control on one side than the other, (a) first test the stronger side, (b) and then the weaker side.

Figure (a)

Figure (b)

By testing the good side first, you start by giving the child encouragement with what he can do well. Also, if the child does not move the weaker side, you will know it is because he cannot, and not because he does not understand or is not trying.

· As you examine the child, give her lots of praise and encouragement. When she tries to do something for you and cannot, praise her warmly for trying.

Figure

Ask her to do things she can do well and not just the things she finds difficult, so that she gains a stronger sense of success.

TESTING RANGE OF MOTION OF JOINTS AND STRENGTH OF MUSCLES

Children who have disabilities that affect how they move often have some muscles that are weak or ‘paralyzed’. As a result, they often do not move parts of their bodies as much as is normal.

Loss of strength and active movement may in time lead to a stiffening of joints or shortening of muscles (contractures, see Chapter 8). As a result, the affected part can no longer be moved through its complete, normal range of motion.

ACTIVE MOVEMENT		PASSIVE MOVEMENT
Normally the shoulder muscles can raise the arm until it is straight up. Figure Lifting the arm like this with the arm’s own muscles is called ACTIVE MOTION.	When the shoulder muscles are paralyzed, the child can no longer actively lift his arm. Figure	At first the paralyzed arm can be lifted straight up with help. This is called PASSIVE MOTION. Figure	Unless the normal range of motion is kept through daily exercises, the passive range of motion will steadily become less and less. Figure Now the arm cannot be raised straight up, even with help.

In the physical examination of a child with any weakness or paralysis of muscles, or joint pain, or scarring from injuries or burns, it is a good idea to test and record both RANGE OF MOTION and MUSCLE STRENGTH of all parts of the body that might have contractures or be affected. There are 2 reasons for this:

· Knowing which parts of the body have contractures or are weak, and how much, can help us to understand why a child moves or limps as she does. This helps us to decide what activities, exercises, braces, or other measures may be useful.

· Keeping accurate records of changes in muscle strength and range of motion can help tell us if certain problems are getting better or worse. Regular testing therefore helps us evaluate how well exercises, braces, casts, or other measures are working, and whether the child’s condition is improving, and how quickly.

For testing range of motion and muscle strength, it helps to first know what is normal. You can practice testing non-disabled, active persons. They should be of the same ages as the disabled children you will test. Age matters because babies are usually weaker and have much more flexible joints than older children. For example:

A baby’s back and hips bend so much he can lie across his straight legs.	A young child bends less but can usually touch his toes with his legs straight.	Around 11 to 14 it is harder to touch toes. His legs grow faster and become longer than his upper body.	Later, upper body growth catches up with legs. He can again touch toes more easily.

In different children (and sometimes in the same child) you may need to check range of motion and strength in the hips, knees, ankles, feet, toes, shoulders, elbows, wrists, hands, fingers, back, shoulder blades, neck, and jaw. Some joints have 6 or more movements to test: bending, straightening, opening, closing, twisting in, and twisting out. See, for example, the different hip movements (range-of-motion exercises) in Chapter 42.

To test both ‘range of motion’ and ‘strength’, first check ‘range of motion’. Then you will know that when a child cannot straighten a joint, it is not just because of weakness.

Range-of-motion testing: Example:

Knee
1. Ask the child to straighten it as much as she can.	Figure	2. If she cannot straighten it all the way, gently see how far you can straighten it without forcing.		With your hands, support the joint on each side as you straighten it.
			Figure
3. If at first the joint will not straighten, keep trying with gentle continuous pressure for 2 or 3 minutes.	Figure		If it still does not straighten, the range of motion is reduced. This is usually because of a contracture (see Chapter 8).
	Figure		If it gradually straightens, spasticity (muscle spasms) may be what makes it difficult. (If it stops before it straightens completely, contractures may also be developing.)
4. If a joint will not straighten completely, try with the child in different positions.	Figure	For example, a knee often does not straighten as much with the hips bent as with the hips straight.	Figure	For this reason, each time you test range of motion to measure changes, be sure the child is in the same position.
Position affects how much certain joints straighten or bend. This is true in any child, but especially in a child with spasticity.
5. In addition to checking how much a joint straightens, check how much it bends.	Figure		If joints are kept straight and never bent, they may stiffen or develop contractures that do not let them bend. (This can happen with joint infection, arthritis, and other conditions, or when a joint is kept in a cast for a long time.)
6. Also check for too much range of motion.	A child who walks on a weak leg often ‘locks’ her knee backward to keep from falling. In time, the knee stretches back more and more, like this.		Figure	The same thing can happen to the child with weak arms who uses crutches (or crawls).

Usually the best positions for checking range of motion are the same as those for doing range-of-motion and stretching exercises. These are shown in Chapter 42.

For methods of measuring and recording range of motion, see Chapter 5.

Precautions when testing for contractures

Testing range of motion of the ankles, knees, and hips is important for evaluating many disabled children. We have already discussed knees. Here are a few precautions when testing for contractures of ankles and hips.

Ankle

Figure	Test the range of motion with the knee as straight as it will go.	With the knee bent, the foot will usually bend up more. But for walking, we need to know how far it bends with the knee straight.
	Figure	Figure

Note: To check ankle range of motion in a child with spasticity:
With his body and knee straight, it may be hard to bend the ankle.	So first bend his neck, body, and knees and then slowly bend up the ankle.	Then slowly straighten his knee while keeping the ankle bent.
Figure	Figure	Figure
Other precautions for testing ankle range of motion are in Chapter 42

Hip

To check how far the hip joint straightens, have the child hold his other knee to his chest, like this, so that his lower back is flat against the table. If his thigh will not lower to the table without the back lifting, he has a bent-hip contracture.

Figure

CAUTION The hips will often straighten more at an angle to the body. So be sure to lower the leg in a straight line with the body, or you can miss contractures that need to be corrected before the child can walk. Figure

Muscle testing

Muscle strength can be anywhere between normal and zero. Test it like this:

If the child can lift the weight of leg all the way, press down on it, to check if she can hold up as much weight as is normal for a girl her age. If she can, her strength is NORMAL. Figure		If she can hold some extra weight, but not as much as is normal, she rates GOOD. Figure
If she can just hold up the weight of her leg, but no added weight, she rates FAIR. Figure	If she cannot hold up the weight of her leg, have her lie on her side and try to straighten it. If she can, she rates POOR. Figure	If she cannot straighten her knee at all, put your hand over the muscles as she tries to straighten it. If you can feel her muscles tighten, rate her TRACE. Figure

Test the strength of all muscles that might be affected. Here are some of the muscle tests that are most useful for figuring out the difficulties and needs of different children.

Note: These tests are simple and mostly test the strength of groups of muscles. Physical therapists know ways to test for strength of individual muscles.

Ankle and Foot

Figure

Note: Sometimes when the muscles that normally lift the feet are weak, the child uses his toe-lifting muscles to lift his foot.

If he lifts his foot with his toes bent up, like this,	see if he can lift it with his toes bent down, like this.
Figure	Figure

Also notice if the foot tips or pulls more to one side. This may show ‘muscle imbalance’.

If the child can walk, see if she can stand and walk on her heels and her toes.

Figure

EXAMPLES OF REASONS FOR TESTING
1. If strength to lift up the foot is WEAK and strength to push down is STRONG, tiptoe contractures may develop - unless steps are taken to prevent them.
2. An ankle with POOR or very uneven strength may be helped by an ankle brace. But if strength is FAIR, exercise may strengthen it - and a brace may weaken it more!
3. Lifting the foot with only the toe muscles may lead to a high-arch deformity.

To learn about which muscles move body parts in different ways, as you test muscle strength, feel which muscles and cords tighten.

Knee

STRAIGHTEN

You can fell the muscle tighten on top of the thigh (1).

BEND

Feel the muscles tighten on the back of the thigh (2).

Feel the tight cords pull here (3).

EXAMPLES OF REASONS FOR TESTING
BEND	1. POOR or NO strength for straightening knee may mean an above-knee brace is needed.
	2. Stronger muscles in back of the thigh than in front can lead to a bent-knee contracture.	Figure

Hips

OPENING

CLOSING

ROTATING HIP OUT (and leg in)

ROTATING HIP IN (and leg out)

BENDING

STRAIGHTENING

If the hip has contractures, test with legs off end of table.

SIDEWAYS LIFT

Note: Weak hip muscles sometimes lead to dislocation of the hip. Be sure to check for this, too.

Testing side-of-hip muscles is important for evaluating why a child limps or whether a hip-band may be needed on a long-leg brace.

TEST FOR WEAK SIDE-OF-HIP MUSCLES IN THE CHILD WHO CAN STAND Have the child stand on the weaker leg.
NORMAL	NOT NORMAL
The child stands straight. The hip tilts up on the lifted leg. Figure	The hip tilts down on the lifted side. Figure	Or the child shifts his whole weight so it balances over the weak hip. Figure This child dips to the side on each step of the weak leg. (This is often seen with polio.)
Note: Dipping to one side when walking is caused more by weak side-of-hip muscles than by a shorter leg. But a shorter leg can make dipping worse.

Stomach and Back

To find out how strong the stomach muscles are, see if the child can do ‘sit ups’ (or at least raise his head and chest).

To test the back muscles, see if he can bend backward like this.

Sitting up with knees bent uses (and tests) mainly the stomach muscles. Feel stomach muscles tighten.	Sitting up with knees straight uses the hip-bending muscles and stomach muscles.	Feel the muscles tighten on either side of the backbone. Notice if they look and feel the same or if one side seems stronger.
Figure	Figure	Figure

You can check a child’s trunk control and strength of stomach, back, and side muscles like this. Have him hold his body upright over his hips, then lean forward and back, and side to side, and twist his body.

Figure

If a child’s stomach and back muscles are weak, he may need braces with a body support - or a wheelchair.

Figure

IMPORTANT: Be sure to check for curvature of the spine - especially in children with muscle imbalance or weakness of the trunk.

Shoulders, Arms, and Hands

When a child’s legs are severely paralyzed but she has FAIR or better trunk strength, she may be able to walk with crutches if her shoulders, arms, and hands are strong enough.

Therefore, an important test is this.

Can she lift her butt off the seat like this?

Figure

If she can, she has a good chance for walking with crutches.

If she cannot lift herself, check the strength in her shoulders and arms:

Figure

If the shoulder pushes down strongly but her elbow-straightening muscles are weak, she may be able to use a crutch with an elbow support.

Figure

Or, if her elbow range of motion is normal, she may learn to ‘lock’ her elbow back like this. However, this can lead to elbow problems.

Figure

You may want to make a chart something like this and hang it in your examining area, as a reminder.

EVALUATING STRENGTH OR WEAKNESS OF MUSCLES
CAUTION: To avoid misleading results, check range of motion BEFORE testing muscle strength.
		Strength rating		Test with the child positioned so that he lifts the weight of the limb.
In muscle testing, it is especially important to note the difference between FAIR and POOR.	Strong enough to be useful.	NORMAL (5)	lifts and holds against strong resistance	Figure
		GOOD (4)	lifts and holds against some resistance	Figure
		FAIR (3)	lifts own weight but no more	Figure
				Test with the child positioned so that he can move the limb without lifting its weight (by lying on his side).
This is because FAIR is often strong enough to be fairly useful (for standing, walking, or lifting arm to eat). POOR is usually too weak to be of much use.	Too weak to be of much use for lifting or bearing weight.	POOR (2)	cannot lift own weight but moves well without any weight	Figure
		TRACE (1)	barely moves	Figure
		ZERO (0)	no sign of movement	Figure

Sometimes with exercise POOR muscles can be strengthened to FAIR; this can greatly increase their usefulness. It is much less common for a TRACE muscle to increase to a useful strength (FAIR), no matter how much it is exercised. (However, if muscle weakness is due to lack of use, as in severe arthritis, rather than to paralysis, a POOR muscle can sometimes be strengthened with exercise to GOOD or even NORMAL. Also, in very early stages of recovery from polio or other causes of weakness, POOR or TRACE strength sometimes returns to FAIR or better.)

Other things to check in a physical examination

Difference in leg length. When one leg is weaker, it usually grows slower, and becomes shorter than the other leg. An extra thick sole on the sandal might help the child stand straighter, limp less, and avoid curving of the spine. A short leg may also be a sign of a dislocated hip. So it helps to check for, and to measure, difference in leg length.

If the child can stand,
Figure	look for a tilt of the hip bones,
	then raise the foot of the short leg until the hips are level.	Figure
and measure the difference

If she cannot stand,
have her lie as straight as she can. Feel and then mark, on both sides of her body, the bony lumps
at the top front corner of the hip bone	and on the inner ankle.
Figure		Pass tape along inner side of knee.
Then measure from here to here with a tape measure or string. Measure each leg and record the difference. If you used a string, just draw lines on your record sheet showing the actual difference in leg length.		Figure

Curve of the spine

Especially when one leg is shorter or there are signs of muscle imbalance in the stomach or back, be sure to check for abnormal curve of the spine (back bone). The 3 main types of spinal curve (which may occur separately or in combination) are:

Sideways curve (scoliosis)
Figure	shoulder higher on side of short leg Check for weaker muscles on this side of spine.	Figure	Have the child bend over. Check for a rib hump on outer side of curve.

Hunch back, rounded back (kyphosis)
May result from weak back muscles, or poor posture.	Figure

Sway back (lordosis)
Figure	May result from weak stomach muscles or bent-hip contractures. (Be sure to check for these.)

Some spinal curves will straighten when a child changes her position, lies down, or bends over. Other spinal curves will not straighten, and these are usually more serious. For more information about examining spinal curve and deformities of the back, see Chapter 20.

Normal position of spine showing the 3 main divisions of the backbone.

EXAMINING THE NERVOUS SYSTEM

Sometimes physical disability results from problems in the muscles, bones, or joints themselves. But often it comes from a problem in, or damage to, the nervous system.

Depending on what part of the nervous system is affected, the disability will have different patterns.

For example, polio affects only certain action nerves at points in the spinal cord (or brain stem). It therefore affects movement. It never affects sensory nerves, so sight, hearing, and feeling stay normal. (See Chapter 7.)

THE NERVOUS SYSTEM The nervous system is the body’s communication system. The ‘central switchboard’ is the brain, from which electrical messages run back and forth, to all parts of the body, through ‘wires’ called nerves. Sensory nerves bring messages from parts of the body about what the body sees (eyes), hears (ears), smells (nose), and feels (skin). Action nerves (motor nerves) carry messages to parts of the body, telling muscles to move. Figure The brain (1) is the main control center of the nervous system. The ‘trunk line’ (2) of the nerves is the spinal cord. It runs from the brain down the middle of the spine. Nerves come out from between each back bone and communicate to a part lower down in the body.

A spinal-cord injury, however, can damage or cut both the sensory and action nerves, so that both movement and feeling are lost. (See Chapter 23.)

Unlike polio and spinal-cord injury, which come from damage to nerves in the spine, cerebral palsy comes from damage to the brain itself. Because any part or parts of the brain may be damaged, any or all parts of the body may be affected: movement, sense of balance, seeing, hearing, speech, and mental ability. (See Chapter 9.)

Therefore, how completely you examine the workings of the nervous system will depend partly on what disability the child appears to have. If it is fairly clear the disability comes from polio, little examination of the nervous system is needed. But sometimes polio and cerebral palsy can be confused. If you have any suspicion that the disability might be caused by brain damage, you wilt want to do a fairly complete exam of nervous system function. Damage to the brain or nervous system can cause problems in any of these areas:

· seeing (See Chapter 30.)

· eye movement or position

· fits or seizures (epilepsy) (See Chapter 29.)

· balance, coordination, and sense of position

· hearing (See Chapter 31.)

· use of mouth and tongue, and speech

· mental ability; level of development

· feeling (pain and touch)

· unusual or strange behaviors; signs of self-damage

· muscle tone (patterns of unusual floppiness, tightness, spasms, or movements). (See Chapter 9.)

· reflexes; muscle jerks

· urine and bowel control (See Chapter 25.)

Methods for testing some of these things are included on the next few pages and on the RECORD SHEETS 2, 3, and 4. Other tests that you will need less often, we include with specific disabilities. Refer to the page numbers listed above.

EVALUATION OF A CHILD WHOSE DEVELOPMENT IS SLOW

For the child who cannot do as much as other children do at the same age, a special developmental evaluation may be helpful. Additional information about the child’s mother during pregnancy, or any difficulties during or after birth may explain possible causes. Measurement of the distance around the head may show possible causes of problems or other important factors. Repeated head-size measurements (once a month at first) may tell us even more.

For example, a child who has had meningitis (brain infection) at age 1, and whose head almost stops growing from that age on, will probably remain quite retarded. We should not expect a lot. However, if the child’s head continues to grow normally, the child may have better possibilities for learning and doing more (although we cannot be sure).

A child who is born with a ‘sack on the back’ (spina bifida) may have a head that is bigger than average. If the head continues to grow rapidly, this is a danger sign. Unless the child has surgery, she may become severely retarded or die. If, however, the monthly measurements show that the head has stopped growing too fast, the problem may have corrected itself. She may not need surgery.

RECORD SHEET 4, on page 41, covers additional questions relating to child development, and includes a chart for recording and evaluating head size.

To help the child who is developmentally delayed, you will first want to evaluate her level of physical and mental development. Chapter 34 explains ways to do this.

You can use the Child Development Chart on pages 292 and 293 to find a child’s developmental level, to plan her step-by-step activities, and to evaluate and record her progress. We have marked this 2-page chart, RECORD SHEET 6.

RECORD SHEETS

On the next 5 pages are the sample RECORD SHEETS that we discussed. You are welcome to copy and use them. However, they are not perfect. They were developed for use by the village rehabilitation team in Mexico, and we are still trying to improve them. Before you make copies, we suggest that you adapt them to meet the needs of your area.

Be sure you have copies made of the RECORD SHEETS you will need before you need to use them.

In addition to the 4 RECORD SHEETS here, you may also want copies of RECORD SHEET 5 “Evaluation of Progress,” page 50, and RECORD SHEET 6, “Child Development Chart,” pages 292 and 293.

Note on RECORD SHEET 1 (CHILD HISTORY): The box at the top of RECORD SHEET 1 is to be filled out after you examine the child. It gives brief, essential information. This will make it easier to find out which disabilities you have seen most often, and to check on what you still need to do for different children. The last few questions on page 2 of RECORD SHEET 1 are for a study PROJIMO is doing on medical causes of disability. Adapt them to study special concerns in your area.

RECORD SHEET 1 (page 1)

RECORD SHEET 1 (page 2)

RECORD SHEET 2

RECORD SHEET 3

RECORD SHEET 4

Figure

Chapter 5: Simple Ways to Measure and Record a Child’s Progress

It is important to keep records of each child’s progress. Careful records help workers and parents to follow the change in the individual child, and to evaluate the effectiveness of advice, therapy, and aids.

We need a clear view of the progress of the whole child in all areas - physical, mental, and social. The Child Development Chart will help us to do this for younger children. For children over 5, at the end of this chapter there is a simple chart (RECORD SHEET 5) for evaluating a child’s increasing ability to do things.

When the parents and child themselves regularly measure and record a child’s progress, they become more aware of gradual improvements. This encourages them to continue with important exercises, aids, and activities.

Unfortunately, the standard way of recording physical deformities and contractures requires knowledge of angles, degrees, and symbols that many people do not understand. For evaluation to become a family tool, we need a way to measure, record, and interpret information that is as simple, clear, and enjoyable as possible. Here are some ideas.

MEASURING JOINT POSITIONS AND CONTRACTURES

You can make a simple measuring tool using 2 flat pieces of wood, plastic, or cardboard. (Tongue depressors work well.)

Other simple methods for recording joint positions are in Chapter 9.

1. Rivet the pieces together on one end.

Figure

2. Line them up exactly with the joint.

Figure

3. Trace the angle on paper.

Figure

4. Do this again every 1 or 2 weeks to see if the joint is straightening with exercise.

Figure

The ‘flexikin’ - an aid to measure and encourage progress

Flexikins are cardboard dolls with joints. Disabled and non-disabled children can make and play with them. They are so easy to use that even parents who cannot read can measure and record their children’s contractures. Because the periodic measurements are recorded as a line of pictures, anyone can see the child’s progress at a glance.

Flexikins - front and side view models

We have found that when families follow their child’s progress using flexikins, both the child and parents are more likely to keep doing stretching exercises. As a result, many contractures can be partly or completely straightened in the home, and there is less need for casting and surgery.

Children making and playing with flexikins. In the PROJIMO village rehabilitation center, all the flexikins used are made by disabled children and the local school children.

Examples of how flexikins are used

Figure Figure Village rehabilitation workers have just made a brace for a child with polio whose leg bends back severely. They want to know if the leg will gradually get better (bend back less). So they ask the mother to measure it every month.

Figure The mother places the flexikin’s leg in the same position as her son’s leg, bent back as far as it goes. She then traces it onto a large sheet of paper. Figure

Figure

Each month she does the same and records the date. (In April her son did not use the brace for 2 weeks and she saw the knee was getting worse. This convinced both mother and boy of the importance of using the brace.)

The flexikins can be used to record a wide variety of positions, deformities, contractures, and limitations in range of motion, mainly of the arms and legs but also of the neck, back, hips, and body:

Figure

Figure

Figure

Figure

Figure

You can draw both arms and legs. First one and the other, like this:

Figure

Figure

In addition to using the small flexikins for record keeping, you can make large flexikins for group teaching. Or use them to keep body proportions correct when making drawings for instruction sheets.

Note: For recording contractures, we have found the side-view flexikin more useful than the front-view one. The side-view flexikin is also easier to make. It is probably the only one you will need for evaluating a child’s progress.

How to make the flexikins

1. Trace the patterns of different pieces onto very thick paper or thin, firm cardboard. Or use old X-ray film.

You can do this using carbon paper. (Make your own carbon paper by completely blackening a sheet of paper with a soft-leaded pencil.)

Or you can glue a copy of the pattern sheet directly to the cardboard.

Figure

(If your program plans to make many flexikins, or have children make them, we suggest you have the patterns printed or mimeographed directly on sheets of thin, firm cardboard.)

2. Cut out the pieces with strong scissors, shears, or a piece of razor blade.

Figure

3. Place the pieces together as shown in the drawings. Make sure the pieces that overlap with dotted lines go behind those with complete lines.

Figure

Figure

4. Fasten the pieces together at the black dots with rivets, pins or thread.

Use the smallest rivets you can find.

Figure

Or string the joints together with thread or yarn (this does not work as well).

Figure

Or use thin wire or string and tie knots.

Figure

Or use sewing pins;

Figure

Rivets usually work best. First punch a hole through each black dot. Put the rivets through and hammer them just enough so that the cardboard joints are tight enough to hold their positions but can be moved without tearing.

You can copy this sheet, or one like it, and give it to parents together with a flexikin. Be sure that you also show them how to use it and then watch them use it.

INSTRUCTIONS FOR USING THE FLEXIKIN
We have given you a ‘flexikin’ so that you can measure and see the progress that your child is making with his exercises or aids.
We suggest you take a new measurement every _____________________________________
Do it like this:
1. Have your child take the position you want to measure (for example, straighten his knee as much as he can).		Figure
2. Put the flexikin in exactly the position the child is in. To do this hold the flexikin at a distance between your eye and the child so that it appears the same size as the child. This will let you line it up exactly.	Figure	Figure
3. Without moving the position of the flexikin, trace it onto a large piece of paper. The first time trace the whole body. Each time measure the child in the same posture.	Figure	This example shows how exercises have helped straighten a contracted knee.
For later recordings, you only need to trace the part or parts you are measuring. Each time you record a measurement, write the date.
In certain cases you may want to measure how far the child can straighten an arm or leg by herself, and how far you are able to straighten it for her (little by little without forcing).	Make 2 columns. In one, record how far the child can move it by herself. In the other column record how far she can move it with help.	Figure
Figure	Here you see the progress of a leg until it became straight and a brace could be made for it.

SIDE-VIEW FLEXIKIN - Patterns of pieces for making it

FRONT-VIEW FLEXIKIN - Patterns of pieces for making it

EVALUATING THE PROGRESS OF THE WHOLE CHILD

A simple way for rehabilitation workers and parents to evaluate how a child is progressing as a whole is to keep a record of her ability to do different things. Each month, or during each visit to the community rehabilitation center, the child’s different abilities are reviewed, tested, or observed. Any changes are recorded.

For children under 5 years old, one way of evaluating a child’s development is to use the RECORD SHEET 6. This chart shows the developmental levels (‘milestones’) for different skills and activities. The first time the child is evaluated, circle the drawing that shows what the child can do in each area.

Each time the child is evaluated, on the same sheet, again circle the appropriate drawing, but use a different color (or a dotted, dashed, or zigzag line). This way, you can see where the child is moving ahead well and where he is behind.

Figure

For evaluating the progress of children over age 5, the charts on the next page may help. Two different approaches are used. Chart A is more objective (requires less personal judgment or opinion) but does not allow for small improvements. Chart B is more subjective (is based more on personal judgments). It considers quality of improvement, not just quantity. You can try both and see which you think gives truer, more useful results.

To use Chart A: For each skill, circle whether the child can do it “without help,” “with a little help,” or “with lots of help.” Add all the numbers you circle. Compare the scores of the first and second visits. For example:

	First visit			Second visit
	without help	little help	lots of help	without help	little help	lots of help
How does the child eat?	4		0		2	0
How does the child drink?	4		0	4		0

Here we see the child has improved his eating skills but not his drinking skills.

To use Chart B: In each area, on the second visit, circle whether the child is doing a lot better, a little better, or the same. Add it all up. The higher the score, the more the child has improved.

NOTE: We question whether the use of numbers may not be misleading. But we think the questions themselves may be a useful guideline. None of these evaluation forms will show all areas of change or improvement. They are not substitutes for detailed notes, drawings, and a good memory!

RECORD SHEET 5

B. Recognizing, Helping with, and Preventing Common Disabilities

Chapter 6: Guide for Identifying Disabilities

This chapter has a chart, 7 pages long, to help you find out what disability a child possibly has, and where to look up that disability in this book.

In the first column of the chart, we list the more noticeable signs of different disabilities. Some of these signs are found in more than one disability. So in the second column we add other signs that can help you tell apart similar disabilities. The third column names the disability or disabilities that are most likely to have these signs. And the fourth column gives the page numbers where you should look in this book. (Where it says WTND and then a number, this refers to the page in Where There Is No Doctor.)

If you do not find the sign you are looking for in the first column, look for another sign. Or check the signs in the second column.

This chart will help you find out which disabilities a child might have. It is wise to look up each possibility. The first page of each chapter on a disability describes the signs in more detail.

IMPORTANT: Some disabilities can easily be confused. Others are not included in this book. When you are not sure, try to get help from someone with more experience. At times, special tests or X-rays may be needed to be sure what the problem is.

Fortunately, it is not always necessary to know exactly what disability a child has. For example, if a child has developed weakness in his legs and you are not sure of the cause, you can still do a lot to help him. Read the chapters on disabilities that cause similar weakness, and the chapters on other problems that the child may have. For this child, you might find useful information in the chapters on polio, contractures, exercises, braces, walking aids or wheelchairs, and many others.

Sometimes it is important to identify the specific disability. Some disabilities require specific medicines or foods - for example, night blindness, rickets, or cretinism. Others urgently need surgery - for example, spina bifida or cleft lip and palate. Others require special ways of doing therapy or exercises - for example, cerebral palsy. And others need specific precautions to avoid additional problems - for example, spinal cord injury and leprosy. For this reason, it helps to learn as much about the disability as you can. Whenever possible, seek information and advice from more experienced persons. (However, even experts are not always right. Do not follow anyone’s advice without understanding the reasons for doing something, and considering if and why the advice applies to the individual child.)

In addition to this chart, 2 other guides for identifying disabilities are in this book:

GUIDE FOR IDENTIFYING CAUSES OF JOINT PAIN
GUIDE FOR IDENTIFYING AND TREATING DIFFERENT FORMS OF FITS (EPILEPSY)

GUIDE FOR IDENTIFYING DISABILITIES

SIGNS PRESENT AT OR SOON AFTER BIRTH

IF THE CHILD HAS THIS	AND ALSO THIS	HE MAY HAVE
born weak or ‘floppy’ Figure slow to begin to lift head or move arms Figure	· often a difficult birth · delayed breathing · born blue and limp · or born before 9 months and very small	· cerebral palsy · developmental delay
	Figure · round face · slant eyes · thick tongue	· Down syndrome (mongolism) · cretinism
	Figure small head, or small top part of head	microcephalia (small brain) mental retardation
	none of above	developmental delay for other reasons
does not suck well or chokes on milk or food Figure	· pushes milk back out with tongue · or will not suck	cerebral palsy
	· cannot suck well · chokes or milk comes out nose	· check for cleft palate Figure · possibly severe retardation
one or both feet turned in or back Figure	no other signs	club foot
	· hands weak, stiff or clubbed · some joints stiff, in bent or straight positions Figure	arthrogryposis
	dark lump on back	spina bifida
‘bag’ or dark lump on back Figure	· clubbed feet · or feet bend up too far Figure · or feet lack movement and feeling	spina bifida (sometimes no ‘bag’ is seen, but foot signs may be present)
head too big: keeps growing Figure	may develop: · eyes like ‘setting sun’ Figure · increasing mental and/or physical disability · blindness	hydrocephalus (water on the brain) At birth, this is usually a sign of spina bifida. in an older child, possibly tapeworm in brain, or a brain tumor
upper lip and/or roof of mouth incomplete Figure	· difficulty feeding · later, speech difficulties Figure	cleft lip (hare lip) and cleft palate
birth deformities, defects, or missing parts Figure	(may or may not be associated with other problems)	See · birth defects · amputations · Down syndrome · developmental delay
abnormal stiffness or position Figure	· from birth · some muscles weak · some joints stiff · head control and mind normal	arthrogryposis Figure
	· Muscles tighten more in certain positions. · may grip thumb tightly Figure	spastic cerebral palsy Note: muscle tightness (spasticity) usually does not appear until weeks or months after birth.
one arm weak or in strange position Figure	does not move the arm much Figure	Erb’s palsy (weakness from damage to nerves in shoulder during birth)
	leg on same side often affected	hemiplegic (one-sided) cerebral palsy
dislocated hip at birth Figure	On opening legs like this, leg ‘pops’ into place or does not open as far. Figure Figure	dislocated hip from birth (often both hips) may be present with: · spina bifida · Down syndrome · arthrogryposis
slow to respond to sound or to look at things Figure	(may be due to one or a combination of problems)	Check for signs of: · developmental delay · cerebral palsy · blindness · deafness

SIGNS IN CHILDREN

IF THE CHILD HAS THIS	AND ALSO THIS	HE MAY HAVE
slower than other children to do things (roll, sit, use hands, show interest, walk, talk) Figure	slow in most or all areas:	Developmental delay, check for signs of:
	· round face · slant eyes · single deep crease in hand Figure	Down syndrome (mongolism)
	· movements and response slow · skin dry and cool · hair often low on forehead · puffy eyelids Figure	cretinism
	has continuous strange movements or positions, and/or stiffness Figure	cerebral palsy also check for: · blindness · deafness · malnutrition
does not respond to sounds, does not begin to speak by age 3 Figure	may respond to some sounds but not others Check for ear infection (pus).	Check for: · deafness · severe developmental delay (with or without deafness) · severe cerebral palsy
does not turn head to look at things, or reach for things until they touch her Figure	Eyes may or may not look normal.	· blindness and/or · severe mental retardation · severe cerebral palsy
Eyelids or eyes make quick, jerky, or strange movements. Figure	Check for one or a combination of these.	· blindness · fits · too much medicine · cerebral palsy · other problems affecting or damaging the brain
All or part of body makes strange, uncontrolled movements. Figure	· begins suddenly, child may fall or lose consciousness · child is normal (or more normal) between ‘fits’	epileptic fits (Pattern varies a lot in different children - or even in the same child.)
	slow, sudden, or rhythmic movements; fairly continuous (except in sleep); no loss of consciousness Figure	athetoid cerebral palsy (Note: Fits and cerebral palsy may occur in the same child.)
Body, or parts of it, stiffens when in certain positions: poor control of some or all movements.	· different positions in different children · Body may stiffen backward and legs cross. Figure	spastic cerebral palsy

PARTS OF BODY WEAK OR PARALYZED

IF THE CHILD HAS THIS	AND ALSO THIS	HE MAY HAVE
floppy or limp weakness in part or all of body no loss of feeling in affected parts no spasticity (muscles that tighten without control) normal at birth	· usually began with a ‘bad cold’ and fever before age 2 Figure · irregular pattern of parts weakened. Often one or both legs - sometimes arm, shoulder, hand, etc.	polio
	· begins little by little and steadily gets worse · about the same on both sides of body · often others in the family also have it Figure	· muscular dystrophy · muscular atrophy
	Figure · Paralysis starts in legs and moves up: may affect whole body. · or, pattern of paralysis variable	tick paralysis Figure Guillain-Barré paralysis (usually temporary) paralysis from pesticides, chemicals, foods (lathyrism)
	lump on back	tuberculosis of spine
floppy or limp weakness usually some loss of feeling	· one or both hands or feet Figure · develops slowly in older child. Gets worse and worse.	leprosy
	· born with bag on back (Look for scar.) Figure · feet weak, often without feeling	spina bifida Figure
	· usually from back or neck injury · weakness, loss of feeling below level of injury · may or may not have muscle spasms · loss of bladder and bowel control	spinal cord injury paraplegia (lower body) quadriplegia (upper and lower body)
	injury to nerves going to one part of body	hand weakness sometimes caused by using crutches wrongly
weakness usually with stiffness or spasticity of muscles no loss of feeling	usually affects body in one of these patterns Figure	· 1: cerebral palsy (or stroke, usually older persons) · 2 and 3: cerebral palsy · occasional other causes
	Muscles tighten and resist movement because of joint pain.	JOINT PAIN (many causes - see below)

JOINT PAIN

IF THE CHILD HAS THIS	AND ALSO THIS	HE MAY HAVE
one or more painful joints	· begins with or without fever · gradually gets worse, but there are better and worse periods Figure	juvenile arthritis
		other causes of joint pain See chart on joint pain.

WALKS WITH DIFFICULTY OR LIMPS

IF THE CHILD HAS THIS	AND ALSO THIS	HE MAY HAVE
dips to one side with each step Figure	one leg often weaker and shorter	Check for: · polio · cerebral palsy · dislocated hip
	· usually begins age 4 to 8 · may complain of knee pain	damaged hip joint
walks with knees pressed together Figure	· muscle spasm and tightness · upper body little affected	spastic diplegic or paraplegic cerebral palsy
stands and walks with knees together and feet apart Figure no other problems	feet less than 3” apart at age 3 Figure	normal from ages 2 to 12
	feet more than 3” apart at age 3 Figure	knock-kneed
walks awkwardly with one foot tiptoe Figure	muscle spasms and poor control on that side. Hand on that side often affected.	hemiplegic cerebral palsy (stroke in older persons)
walks awkwardly with knees bent and legs usually separated Figure	· jerky steps, poor balance · sudden, uncontrolled movements that may cause falling	athetoid cerebral palsy
	· slow ‘drunken’ way of walking · learns to walk late and falls often	· poor balance (ataxia) - often with cerebral palsy · Down syndrome (mongolism) · cretinism
walks with both feet tiptoe Figure	· weakness, especially in legs and feet · gradually gets worse and worse	muscular dystrophy
	legs and feet stiffen (spasticity of muscle)	spastic cerebral palsy
	no other problems	normal? (some normal children at first walk on tiptoes)
walks with hand(s) pushing thigh(s) or with knee(s) bent back Figure	Figure difficulty lifting leg	· polio · muscular dystrophy · arthritis (joint pain) · other causes of muscle weakness
Foot hangs down weakly (foot drop). Figure	Child lifts foot high with each step so that it will not drag. Figure	· polio · spina bifida · muscular dystrophy · muscular atrophy · nerve or muscle injury · other cause of weakness
dips from side to side with each step Figure	due to muscle weakness at side of hips, or double dislocated hips, or both	· polio · cerebral palsy · spina bifida · Down syndrome · muscular dystrophy · child who stays small · arthrogryposis · dislocated hips (may occur with any of the above)
walks with one (or both) hip, knee, or ankle that stays bent Figure	joints cannot be slowly straightened when child relaxes	· contractures (shortened muscles) · joined or fused joints may be secondary to: · polio · joint infection · other causes
	Joints can gradually be straightened when child relaxes.	spasticity, often cerebral palsy
Knees wide apart when feet together (bow legs). Waddles or dips from side to side (if he walks). Figure	under 18 months old	often normal
	Any combination of these: · Joints look big or thick. · Child is short for age. · Bones weak, bent, or break easily. · Arms and legs may seem too short for body, or ‘out of proportion’. · Belly and butt stick out a lot. Figure	Consider: · rickets (lack of vitamin D and sunlight) · brittle bone disease · children who stay very short (dwarfism) · cretinism · Down syndrome · dislocated hips
flat feet Figure	no pain or other problems	normal in many children
	· Pain may occur in arch of foot. · Deformity may get worse.	may be problems in: · cerebral palsy · polio · spina bifida · Down syndrome

BACK CURVES AND DEFORMITIES

IF THE CHILD HAS THIS	AND ALSO THIS	HE MAY HAVE
sideways curve of backbone Figure	When child bends over, look for a lump on one side. Figure	‘scoliosis’ - may occur alone or as complication of: · polio · cerebral palsy · muscular dystrophy · spina bifida · other physical disability
sway back Figure	· belly often sticks out · may be due to (1) contractures here, or weak stomach muscles	‘lordosis’ - may occur in: · polio · spina bifida · cerebral palsy · muscular dystrophy · Down syndrome · cretinism · child who stays small · many other disabilities
rounded back Figure		‘kyphosis’ - often occurs with: · arthritis · spinal cord injury · severe polio · brittle bone disease
(1) hard, sharp bend of or bump in backbone Figure	· starts slowly and without pain · often family history of tuberculosis · may lead to paralysis of lower body	tuberculosis of the spine
dark soft lump over backbone Figure	· present at birth · sometimes only a soft or slightly swollen area over spine · weakness and loss of feeling in feet or lower body	spina bifida (‘sack on the back’)

OTHER DEFORMITIES

IF THE CHILD HAS THIS	AND ALSO THIS	HE MAY HAVE
missing body parts	born that way Figure	born with missing or incomplete parts
	accidental or surgical loss of limbs (amputation) Figure	amputations
	gradual loss of fingers, toes, hands, or feet, often in persons who lack feeling Figure	· osteomyelitis (bone infections) sometimes seen with; · leprosy (hands or feet) · spina bifida (feet only)
hand problems	· floppy paralysis (no spasticity) Figure · without care may lead to contractures so that fingers cannot be opened	may occur with: · polio · muscular dystrophy · muscular atrophy · spinal cord injury (at neck level) · leprosy · damage to nerves or cords of arms All may lead to contractures.
	· uncontrolled muscle tightness (spasticity) · strange movements · or hand in tight fist Figure	spastic cerebral palsy may lead to contractures
	burn scars and deformities Figure	burns
clubbing or bending of feet	may begin as floppy weakness and become stiff from contractures, if not prevented Figure	may occur with many physical disabilities, including: · polio · cerebral palsy · spina bifida · muscular dystrophy · arthritis · spinal cord injury

DISABILITIES THAT OFTEN OCCUR WITH OR ARE SECONDARY TO OTHER DISABILITIES

IF THE CHILD HAS THIS	AND ALSO THIS	HE MAY HAVE
Developmental delay: child slow to learn to use her body or develop basic skills Figure	caused by slow or incomplete brain function or by severe physical disability, or both	often seen in: · mental retardation · cerebral palsy · severely or multiply disabled children
	caused by overprotection: treating children like babies when they could do more for themselves	some delay can occur with almost any disability
Contractures joints that no longer straighten because muscles have shortened Figure	· usually due to muscle weakness or spasticity · Often, muscles that pull a joint one way are much weaker than those that pull it the other way (muscle imbalance).	often secondary to: · polio · cerebral palsy · spina bifida · arthritis · muscular dystrophy · Erb’s palsy · amputations · leprosy
	sometimes due to scarring from burns or injuries	burns
Behavior problems Figure	may come from: · brain damage · difficulty understanding things · overprotection · difficult home situation (Some children with epilepsy from brain damage may pull out hair, bite themselves, etc.)	behavior problems common with: · mental retardation · fits (epilepsy) · cerebral palsy and for emotional reasons, with: · spinal cord injury · muscular dystrophy · deafness · learning disability
Slow to learn certain things only; otherwise intelligent.	· often over-active or nervous · sometimes behavior problems	learning disability
Speech and communication problems	· often, but not always, due to deafness or retardation (or both) · Some children can hear well and are but still cannot speak. Figure	may occur with: · deafness · developmental delay · cerebral palsy · Down syndrome · cretinism · children who stay small · brittle bone disease · cleft lip and palate (Deafness may occur together with these and other disabilities.)
other problems that sometimes occur secondary to other disabilities (Some of these we have already included in this chart.)	Main disability · cerebral palsy	Common secondary disabilities · blindness · deafness · fits
	· many disabilities with paralysis	· spinal curve
	· persons who have lost feeling: leprosy, spinal cord injury, spina bifida	· pressure sores · osteomyelitis (bone infection) · loss of urine and bowel control

Chapter 7: Polio: Infantile Paralysis

HOW TO RECOGNIZE PARALYSIS CAUSED BY POLIO

MUSCLES COMMONLY WEAKENED BY POLIO

· Paralysis (muscle weakness) usually begins when the child is small, often during an illness like a bad cold with fever and sometimes diarrhea.

· Paralysis may affect any muscles of the body, but is most common in the legs. Muscles most often affected are shown in the drawing.

· Paralysis is of the ‘floppy’ type (not stiff). Some muscles may be only partly weakened, others limp or floppy.

· In time the affected limb may not be able to straighten all the way, due to shortening, or ‘contractures’, of certain muscles.

· The muscles and bones of the affected limb become thinner than the other limb. The affected limb does not grow as fast, and so is shorter.

· Unaffected arms or legs often become extra strong to make up for parts that are weak.

· Intelligence and the mind are not affected.

· Feeling is not affected.

· ‘Knee jerks’ and other tendon reflexes in the affected limb are reduced or absent. (In cerebral palsy, ‘knee jerks’ often jump more than normal.) Also, the paralysis of polio is ‘floppy’; limbs affected by cerebral palsy often are tense and resist when straightened or bent.

Figure

· The paralysis does not get worse with time. However, secondary problems like contractures, curve of the backbone and dislocations may occur.

Of children who become paralyzed by polio: 30% recover completely in the first weeks or months. Figure 30% have mild paralysis. Figure 30% have moderate or severe paralysis. Figure 10% die (often because of difficulty breathing or swallowing). Figure

BASIC QUESTIONS AND ANSWERS ABOUT POLIO

How common is it? In many countries, polio - or ‘poliomyelitis’ - is still the most common cause of physical disability in children. In some areas, at least one of every 100 children may have some paralysis from polio. Where vaccination programs are effective, polio has been greatly reduced.

What causes it? A virus (infection). The infection attacks parts of the spinal cord, where it damages only the nerves that control movement. In areas with poor hygiene and lack of latrines, the polio infection spreads when the stool (shit) of a sick child reaches the mouth of a healthy child. Where sanitation is better, polio spreads mostly through coughing and sneezing.

Paralysis in one leg

Do all children who become infected with the polio virus become paralyzed? No, only a small percentage become paralyzed. Most only get what looks like a bad cold, with fever. However, if a child with a ‘cold’ caused by the polio virus is given an injection of any medication, the irritation caused by the injection can bring on paralysis.

Is the paralysis contagious? No, not after 2 weeks from when a child first gets sick with polio. In fact, most polio is spread through the stool of non-paralyzed children who have ‘only a cold’ caused by the polio virus.

Severe paralysis

At what age do children get polio? In areas with poor sanitation, polio most often attacks babies from 8 to 24 months old, but occasionally children up to age 4 or 5. As sanitation improves, polio tends to strike older children and even young adults.

Who does it most often affect? Boys, a little more than girls. Unvaccinated children much more often than vaccinated children. Young children who are given injections unnecessarily are paralyzed by polio more often those who are not.

How does the paralysis begin? It begins after signs of a cold and fever, sometimes with diarrhea or vomiting. After a few days the neck becomes stiff and painful and parts of the body become limp. Parents may notice the weakness right away, or only after the child recovers from the acute illness.

Once a child is paralyzed, what changes or improvements can be expected? Often the paralysis will gradually go away, partly or completely. Any paralysis left after 7 months is usually permanent. The paralysis will not get worse. However, certain secondary problems may develop - especially if precautions are not taken to prevent them.

What are the child’s chances of leading a happy, productive life? Usually very good-provided the child is encouraged to do things for himself, to get the most out of school, and to learn useful skills within his physical limitations.

Can persons with polio marry and have normal children? Yes. Polio is not inherited (familial) and does not affect ability to have children.

SECONDARY PROBLEMS TO LOOK FOR WITH POLIO

By secondary problems, we mean further disabilities or complications that can appear after, and because of, the original disability.

CONTRACTURES OF JOINTS

A contracture is a shortening of muscles and tendons (cords) so that the full range of limb movement is prevented.

Unless preventive steps are taken, joint contractures will form in many paralyzed children. Once formed, often they must be corrected before braces can be fitted and walking is possible. Correction of advanced contractures, whether through exercises, casts, or surgery (or a combination), is costly, takes time and causes discomfort. Therefore early prevention of contractures is very important.

A full discussion of contractures, their causes, prevention, and treatment is in the next chapter (Chapter 8). Methods and aids for correcting contractures are described in Chapter 59.

TYPICAL CONTRACTURES IN POLIO A child with paralysis who crawls around like this and never straightens her legs will gradually develop contractures so that her hips, knees, and ankles can no longer be straightened. Figure
TYPICAL DEFORMITIES OF ANKLE AND FOOT
bending down at ankle (tiptoe contracture)	bending down at mid-foot	bending out at ankle	bending in at ankle

OTHER COMMON DEFORMITIES

Weight bearing (supporting the body’s weight) on weak joints can cause deformities, including:

OVER-STRETCHED JOINTS		DISLOCATIONS
Figure	Figure	partly or completely dislocated joints (especially knee, foot, hip, shoulder, elbow, thumb)	partly dislocated foot

WARNING: Dislocations like these are sometimes caused by stretching contractures incorrectly.

SPINAL CURVE

Minor curve of spine can be caused by tilted hips, as a result of a short leg.

Figure

More serious curve of the spine is caused by muscle weakness of the back or body muscles. The curve can become so severe that it endangers life by leaving too little room for the lungs and heart.

a severely paralyzed child

At first, the spinal curve straightens when the child is positioned better. But in time the curve becomes more fixed (will not straighten any more). For information on spinal curves, see Chapter 20.

WHAT OTHER DISABILITIES CAN BE CONFUSED WITH POLIO?

· Sometimes cerebral palsy can be mistaken for polio - especially cerebral palsy of the ‘floppy’ type.

However, cerebral palsy usually affects the body in typical patterns:

CEREBRAL PALSY

Polio has a more irregular pattern of paralysis:

POLIO

In cerebral palsy, usually you can find other signs of brain damage: over-active knee jerks and abnormal reflexes, developmental delay, awkward or uncontrolled movement, or at least some muscle tenseness (spasticity).

· In muscular dystrophy, paralysis begins little by little and steadily gets worse.

Figure

· Hip problems can cause limping, and muscles may become thin and weak. Check hips for pain or dislocations. (Note: Dislocated hip may also occur secondary to polio.)

Figure

· Clubbed foot is present from birth.

Figure

Note: Polio can occur before or after a child has any of these other problems. Check carefully.

· ‘Erb’s palsy’, or partial paralysis in one arm and hand, comes from birth injury to the shoulder.

Figure

· Leprosy. Foot and hand paralysis begins gradually in older child. Often there are skin patches and loss of feeling.

Figure

· Spina bifida is present from birth. There is reduced feeling in the feet, and often a lump (or scar from surgery) on the back.

Figure

ALWAYS EXAMINE THE BACK IN A CHILD WITH PARALYSIS OF THE LEGS, AND CHECK FOR FEELING.

· Injuries to the spinal cord or to particular nerves going to the arms or legs. There is usually a history of a severe back or neck injury, and loss of feeling in the paralyzed part.

Figure

· Tuberculosis of the spine can cause gradual or suddenly increasing paralysis of the lower body. Look for typical bump on spine.

Figure

· Other causes of paralysis or muscle weakness. There are many causes of floppy paralysis similar to polio. One of the most common is ‘Guillain-Barré’ paralysis. This can result from a virus infection, from poisoning, or from unknown causes. It usually begins without warning in the legs, and may spread within a few days to paralyze the whole body. Sometimes feeling is also reduced. Usually strength slowly returns, partly or completely, in several weeks or months. Rehabilitation and prevention of secondary problems are basically the same as for polio.

WHAT CAN BE DONE?

DURING THE ORIGINAL ILLNESS, when the child first becomes paralyzed:

· No medicines help, either during the first illness, or later.

· Rest is important. Avoid forceful exercise because this may increase paralysis. Avoid injections.

· Good food during recovery helps the child become stronger. (But take care that the child does not eat too much and get fat. An overweight child will have more problems with walking and other movements.) For suggestions about good food, see Where There Is No Doctor, Chapter 11.

· Position the child to be comfortable and to avoid contractures. At first the muscles will be painful, and the child will not want to straighten his joints. Slowly and gently try to straighten his arms and legs so that the child lies in as good a position as possible. (See Chapter 8.)

GOOD POSITION

Arms, hips, and legs as straight as possible. Feet supported.

BAD POSITION

Bent arms, hips, and legs. Feet in tiptoe position.

Note: To reduce pain, you may need to put cushions under the knees, but try to keep the knees as straight as you can.

FOLLOWING THE ORIGINAL ILLNESS:

· Continue with good food and good positions.

· As soon as the fever drops, start exercises to prevent contractures and return strength. Range-of-motion exercises are described in Chapter 42. Whenever possible, make exercises fun. Active games, swimming, and other activities to keep limbs moving as much as they can are important throughout the child’s rehabilitation.

· Crutches, leg braces (calipers), and other aids may help the child to move better and may prevent contractures or deformities.

· In special cases, surgery may be needed to correct contractures, or to change the place where strong muscles attach, so that they help do the work of weak ones. When a foot is very floppy or bends to one side, surgery to join certain bones of the foot may help. But because bone surgery stops the growth of the foot, usually it should not be done before age 12 or 13.

Figure

· Encourage the child to use his body and mind as much as possible, to play actively with other children, to take care of his daily needs, to help with work, and to go to school. As much as possible, treat him like any other child.

REHABILITATION OF THE CHILD WITH PARALYSIS

All children paralyzed by polio can be helped by certain basic rehabilitation measures - such as exercise to keep a full range of motion in the affected limbs.

However, each child will have a different combination and severity of paralyzed muscles, and therefore will have his own special needs.

For some children, normal exercise and play may be all that are needed. Others may require special exercises and playthings. Still others may need braces or other aids to help them move about better, do things more easily, or keep their bodies in healthier, more useful positions. Those who are severely paralyzed may be helped most by a wheelboard (trolley) or wheelchair.

For this child, walking provides exercise that stretches his legs and feet, and prevents contractures. (Tilonia, India)

Every child needs to be carefully examined and evaluated in order to best meet his or her particular needs. The earlier you evaluate a child’s needs, and take steps to meet them, the better.

Unfortunately, in most areas where polio is still common, village rehabilitation programs do not exist or are just beginning. Many children (and adults) who have been paralyzed for a long time already have severe deformities or joint contractures. Often these must be corrected before a child can use braces or begin to walk.

This child, who had polio as a baby, already had severe contractures in the hips, knees, and feet. (PROJIMO)

It took several months of exercises at home and then a series of plaster casts in the village rehabilitation center to straighten the contractures so he could walk with braces.

Because contractures are such a common problem, not only with polio but with many other disabilities, we discuss them separately in the next chapter. Before evaluating a child with polio, we strongly suggest you read Chapter 8 on contractures.

WARNING: Before deciding on any aid or procedure, carefully consider its advantages and disadvantages. For example, some deformities may be best left uncorrected because they actually help the paralyzed child stand straighter or walk better. And some aids or braces may prevent a child from developing strength to walk without aids. Before deciding what aid or procedure to use, we suggest you read Chapter 56, “Making Sure Aids and Procedures Do More Good Than Harm.”

PROGRESS OF A CHILD WITH POLIO: THE CHANGING NEEDS FOR AIDS AND ASSISTANCE

1. exercises to keep full range of motion, starting within days after paralysis appears and continuing throughout rehabilitation

Figure

2. supported sitting in positions that help prevent contractures

Figure

3. active exercises with limbs supported, to gain strength and maintain full motion

Figure

4. exercise in water-walking, floating, and swimming, with the weight of the limbs supported by the water

Figure

5. wheelboard or wheelchair with supports to prevent or correct early contractures.

Figure

Note: These also provide good arm exercise in preparation for walking with crutches.

6. braces to prevent contractures and prepare for walking

Figure

7. parallel bars for beginning to balance and walk

Figure

8. walking machine or ‘walker’

Figure

9. crutches modified as walker for balance and extra support

Figure

10. under arm crutches

Figure

11. forearm crutches

Figure

and perhaps in time...

12. a cane or no arm supports at all

Figure

Note: These pictures are only an example - but most of the steps are necessary for many children. Children who begin rehabilitation late may also have contractures or deformities requiring corrective steps not shown here.

EVALUATING A CHILD’S NEEDS FOR AIDS AND PROCEDURES

Step 1: Start by learning what you can through talking with the child and family (see Child’s History). As you do this, watch the child move about. Observe carefully which parts of the body seem strong, and which seem weak. Look for any differences between one side of the body and the other - such as differences in the length or thickness of the legs. Are there any obvious deformities, or joints that do not seem to straighten all the way? If the child walks, what is unusual about the way she does it? Does she dip forward or to one side? Does she help support one leg with her hand? Is one hip lower than the other? Or one shoulder? Does she have a humpback, a swayback, or a sideways curve of the back?

These early observations will help you know what parts of the body you most need to check for strength and range of motion. Often, by watching a child you can begin to get an idea about what kind of aids or assistance may help. For example:

Carmen appears to have severe paralysis affecting both legs and her right arm. Weakness in her trunk (main part of the body) appears to have caused a severe S-shaped curve of the spine. Figure She will probably never walk, and will need a wheelchair or wheel board. Figure You may want also to make her a body brace (1), or help her in other ways to sit more upright and try to keep the spine from bending more.

Pedro appears to have severe paralysis in his legs and hips. It looks as if his hips, knees, and feet cannot straighten (contractures). Weak stomach muscles and severe hip contractures may be the cause of his swayback. Figure Figure (1) Because his arms look strong, Pedro will probably be able to walk with crutches and leg braces. But first his contractures must be straightened. (2) strap to gradually straighten hips (3) casts to straighten knees and ankles If the contractures cannot be straightened by gradual stretching, he may need surgery. Figure Because of hip weakness, he may need long leg braces with a hip band.

Manuel walks with the help of a stick. He appears to have paralysis mainly in his right leg and foot. Because of weak thigh muscles, he ‘locks’ his knee backward in order to bear weight on it. This ‘back-kneeing’ has become more and more extreme as the cords behind the knee stretch. The foot is very unstable and flops to one side. The weaker leg looks somewhat shorter - and for walking is much shorter because of the bent-back knee and bent-over foot. Figure He might be able to walk without the stick if he uses a below-knee brace to stabilize his foot. Figure But the back-knee would become worse and worse until he could not walk. So probably he should have a long-leg brace. The brace might allow his knee to bend backward just a little for stability - so that no knee lock is needed.

Afia leans forward and pushes her weak left thigh with her hand when she walks. Her left knee cannot quite straighten. Her weak leg looks a little shorter than the other. Figure Exercises to get her knee straighter or so it can bend very slightly backward may be all that is needed for Afia to walk without using her hand. Figure Or she may need an above-knee brace with a strap to pull the knee back. Figure Or she may only need a below-knee brace that helps push her knee back. Figure The brace bends the foot down just a little, so that by bearing weight on toes (rather than heel) her knee is pushed back. To get a better idea about which of the three solutions may work best for Afia, you will need to do a careful physical examination, testing range of motion and muscle strength of the hip, knee, and ankle joints.

Step 2: This is the physical examination. It should usually include:

1. Range-of-motion testing, especially where you think there might be contractures. (See “Physical Examination”, and “Contractures”)

2. Muscle testing, especially of muscles that you think may be weak. Also test muscles that need to be strong to make up for weak ones (such as arm and shoulder strength for crutch use).

3. Check for deformities: contractures; dislocations (hip, knee, foot, shoulder, elbow); difference in leg length; tilt of hips; and curve or abnormal shape of the back.

Step 3: After the physical exam, again observe how the child moves or walks. Try to relate her particular way of moving and walking with your physical findings (such as weakness of certain muscles, contractures, and leg length).

Step 4: Based on your observations and tests, try to figure out what kind of exercises, aids, or assistance might help the child most. Consider the advantages of different possibilities: benefit, cost, comfort, appearance, availability of materials, and whether the child is likely to use the aid you make. Ask the child and parents for their opinions and suggestions.

Step 5: Before making a final brace or aid to fit the child, if possible test to see how well it may work by using a temporary aid or old brace from another child. For example,

If a child’s ankle bends over to the outside like this...

...a lift on the outer side of the sole like this, may help to keep the foot straighter.

But before nailing and glueing in the lift, quickly make a trial one of cardboard or something else and fasten it temporarily to the sandal or shoe with tape or string. Then have the child walk.

Figure

Note: For a few children, a lift like this will help. For many it will not.

Ask the child what she thinks.

Step 6: After the child, her parents, and you have decided what kind of brace or aid might work best, take the necessary measurements and make the brace or aid. When making it, once again it is wise to put it together temporarily so that you can make adjustments before you rivet, glue, or nail it into its final form.

Step 7: Have the child try the brace or aid for a few days to get used to it and to see how well it works. Ask the child and parents if it seems to help. Does it hurt? Are there any problems? How could it be improved? Is there something that might work better? Make what adjustments are necessary. But remember that no brace or aid is likely to meet the needs of a child perfectly. Do the best you can.

Mari and Chelo making a child’s brace

Here is a story of how workers in a small village rehabilitation program figured out what kind of aids a child needed. How many of the steps we have just discussed did they follow? Was each step important?

A STORY: A BRACE FOR SAUL Figure One day a mother from a neighboring village arrived at the village center with her 6 year old son, Saul. Mari and Chelo, 2 of the village rehabilitation workers, welcomed them warmly. Learning that Saul had polio as a baby, they asked him to walk, and then to run, while they watched carefully. Saul limped a lot and one leg looked thinner and shorter. With each step it bent back at the knee. “He walks quite well, really,” said Mari. “But he has to ‘lock’ his knee back in order to put weight on it. That knee is going to keep stretching back and some day it will give out.” “A long-leg brace would protect his knee,” suggested Chelo. “Oh, please, no!” said Saul’s mother. “A year ago we took Saul to the city and the doctors had a big metal brace made for him. It cost so much we are still in debt! Saul hated it! He would always take it off and hide it. We tried and tried to get him to use it, but he wouldn’t.” Figure “That’s not surprising,” said Mari. “Often a child who can walk without a brace will refuse to use one - even if he walks better with it. We could make him a long-leg brace out of plastic. It would be much lighter. What do you say, Saul?” Saul began to cry. “Don’t worry, Saul. Maybe we can do something simpler,” said Mari. “But first let’s examine you, okay?” Saul nodded. On muscle testing Saul, they found he could not straighten his knee at all. But he had fair strength for bending his knee back and his hip forward, and good strength for bending his hip back, Figure and his hip forward, Figure and good strength for bending his hip back, Figure “With the hip and thigh strength he has, he should almost be able to stand on that leg without the knee bending back,” said Mari. “Saul, let’s see you try it like this. Pretend you’re a stork!” For a moment Saul could do it. “Good!” said Mari. “Every day stand like that and see how high you can count without letting your knee go back. Every day try to beat your old record! Okay?” “Okay,” said Saul. “Sounds like fun!” Figure “The stork exercises may help,” said Chelo. “But I still think he needs a brace. At I east at first.” “We must weigh the advantages against the disadvantages,” said Mari. “A long-leg brace would keep his knee straight. But it could weaken the muscles he needs to strengthen. Since the brace would keep his leg from bending back, he wouldn’t have to use his muscles to do it”. A long-leg brace might weaken the muscles Saul needs to strengthen. “On the other hand, we might try a short-leg brace that holds his foot at almost a right angle. Then, to step flat he will have to keep his knee nearly straight. It could help him strengthen his behind-the-thigh muscles.” “Let’s try it!” Everyone agreed, except Saul. short-leg plastic brace Chelo brought someone’s old, lower-leg plastic brace and showed it to Saul. “See how it will fit right around your leg. It isn’t heavy at all. Lift it! And no metal joints to get in the way! What do you say? Do you want to try it?” “I guess so,” said Saul. When the brace was made, they tested it. Saul said he liked it. At first, when he tried hard, he could walk without bending his knee back. But after a few days, his mother complained that often he would walk, or even stand, with his knee bent way back as before, and his toes in the air, like this. “WE THOUGHT IT WOULD WORK LIKE THIS...” “BUT IN FACT IT WORKED LIKE THIS.” “I have an idea,” said Chelo. “Why don’t we let the heel stick out behind the shoe. That way, when he steps, his weight will come well forward of the back of his heel. This should help bring his foot down and his knee forward.” They tried it, and most of the time (especially when he was reminded) Saul walked without letting his knee bend back much. Figure At home Saul’s mother encouraged him to do his stork exercises. As his muscles grew stronger, he began to walk without bending his knee far back - even in active play! Figure Figure

“WILL MY CHILD EVER BE ABLE TO WALK?”

This is often one of the first questions asked by the parents of a disabled child. It is an important question. However, we must help parents realize that other things in life can be more important than walking.

Figure

If the child whose legs are severely paralyzed by polio is to walk, generally she will need at least 2 things:

1. fairly strong shoulders and arms for crutch use

2. fairly straight legs (hips, knees, and feet). (It is important to correct contractures so that the legs are straight or nearly straight before trying to adapt braces for walking.)

To evaluate a child’s possibility for walking, always test arm and shoulder strength:

Have her try to lift her body weight off the ground with her arms, like this.

If she can easily lift up and down several times, she has a GOOD chance of being able to walk using crutches.

If her arms and shoulders are so weak she cannot begin to lift herself, her chances for crutch-walking are POOR.

Figure

If her shoulder and arm strength is FAIR, and the child can almost lift herself, dally exercise lifting her weight like this may increase strength enough to make crutch use possible

Figure

Having the child lift herself while holding a bar like this (1) will also help strengthen her hands and wrists for crutch use.

Figure

Pushing herself in a wheelchair or wheelboard (trolley) (2) is a practical way to strengthen shoulders, arms, and hands.

If the child cannot lift herself because of weak elbows, put simple splints on her arms to see if she can lift herself with these.

Figure

If she can lift herself with the elbow splints, maybe she can use crutches that give elbow support.

Figure

If she is fat, she should lose weight. This will make walking on weak limbs much easier.

Figure

Now check how straight the legs will go. (See range-of-motion testing)

If the hips, knees, and feet can be placed in fairly straight positions, chances for walking soon with braces are good (if arm strength is good).

Figure

But if the child has much contracture of the hips, knees, or feet, these will need to be straightened before she will be able to walk.

Figure

Sometimes, if contractures are severe in one leg only the child can learn to walk on the other leg only, with crutches. But it is best with both legs, whenever possible.

Figure

For correction of contractures, see Chapters 8 and 59.

After checking arm strength and leg straightness, the next thing to check is the strength in the ankles, knees, and hips. This will help you decide if the child needs braces, and what kind.

A child with a foot that hangs down (foot drop), or flops to one side may be helped by a below-knee brace of plastic or metal.

For foot drop, you can make a brace that lifts the foot with a spring or rubber band.

Foot drop: he cannot lift his foot.

Foot flops to one side.

PLASTIC

METAL

Figure

The kind of brace you choose will depend on various factors, including cost, available skills and materials, and what seems to work best for the particular child. Advantages and disadvantages of different kinds of braces, and how to make them, are discussed in Chapter 58.

A child with a weak knee may need a long-leg brace of plastic or metal.

Figure

Figure

Figure

Upper-leg braces may be made with or without a knee joint that locks straight for walking and bends for sitting. Different models are discussed in Chapter 58.

Note: Not all children with no strength to straighten the knee need long-leg braces: A child with strong butt muscles may be able to walk without a brace.

Figure

Figure

STRONG butt muscles (1) pull the thigh back and keep the knee from bending.

Figure

A child who has FAIR butt strength and a straight knee may be helped enough by a lower-leg brace (2) that pushes the knee back.

brace pushes knee back(3)

Slightly downward angle of a stiff brace causes it to push the knee backward when weight bearing (4).

Figure

A child with weak butt muscles may walk with one hand pushing on the weak thigh (5).

Figure

Or he may walk by bending the knee back to ‘lock’ it for weight bearing (6).

CAUTION: A stiff foot with a moderate tiptoe contracture may help push the knee back, just like a stiff brace. Correcting the contracture may make walking more difficult or impossible, so that a brace is needed where none was needed before. (See Chapter 56.) Figure

If a child has a contracture and cannot walk with his knee straight, correcting the contracture until his knee bends very slightly backward may allow him to walk better.

A child with very weak hip muscles may find his leg flops or twists about too much with a long-leg brace.

Figure

or if he cannot turn his leg in and out like this,

it may flop and twist with a brace like this.

He may need a brace with a hip band to help stabilize the leg at the hip.

BETTER

A hip band that sits on the butt (1) often provides better posture than a higher waistband.

joint for sitting (with a lock if necessary) (2)

A plastic hip band is less stable but more flexible and allows better stepping in some children.

WORSE

A hip band that passes above the butt often lets the butt stick way out and causes swayback (3).

A child with weak body and back muscles, who cannot hold up her body well, may need long-leg braces attached to a body brace or body jacket.

If she has difficulty holding her body up like this,

she may need a brace with body support.

Note: Often a child at first may need a hip band or body jacket to help stabilize her for walking. A few weeks or months later she may no longer need it. Removing it may help the child gain more strength and control. It is important to re-evaluate the child’s needs for bracing periodically.

Take care to use no more bracing than is needed.

A child whose backbone is becoming seriously curved may benefit from a body brace (or in severe cases, she may need surgery).

Figure

If necessary, the body brace can be attached to long-leg braces as shown above.

More information on spinal curve can be found in Chapter 20. For information on how to make body braces and jackets, see Chapter 58.

PREVENTION OF POLIO

· Vaccinate babies with polio vaccine. Be sure they get the vaccine 3 times by the time they are 8 months old. It is usually best to give the first polio vaccination around 3 months of age.

POLIO VACCINE, the best protection - IF it has been kept cold continuously! Figure

· Vaccinate as many children as possible. The vaccine given by mouth is alive. So, if most of the children are vaccinated, the live vaccine will spread to children who have not been vaccinated, and protect them also.

· Try to keep the live polio vaccine frozen until shortly before it is used. For up to 3 months it can be thawed and refrozen. But it must be kept cold or it will spoil.

· Seek community help with vaccination and in keeping vaccine cold. Sometimes vaccines do not reach villages because health posts lack refrigeration. But often storekeepers and a few families have refrigerators. Win their interest and cooperation.

Figure

· To give best protection, vaccinate the child when she does not have a fever or a cold or diarrhea. But if by 6 months of age, the child still has not been vaccinated, give her the polio vaccine even if she is a little sick. However, there is a chance that the vaccine may not work if it is given when the child is sick (with a virus infection). Therefore, still try to give the complete series of 3 vaccinations and one booster later, when the child is not sick.

It is estimated that in poor countries at least one-third of vaccines are spoiled by the time they reach the children. Therefore, even in children who have been vaccinated, additional precautions are needed:

· Breast feed your baby as long as possible. Breast milk contains ‘antibodies’ that may help protect against polio. (Babies rarely get polio before 8 months old because they still have their mothers’ antibodies. Breast feeding may make this protection last longer.)

BREAST MILK PROTECTS AGAINST INFECTIONS-INCLUDING POLIO

· Do not give injections of any medicine to babies or children, except when absolutely necessary. Irritation caused by injected medicine can turn a mild, undiagnosed polio infection into paralysis. It is estimated that today 1 out of 3 cases of paralysis from polio is brought on by injections.

DANGER! Figure INJECTIONS CAN CAUSE PARALYSIS FROM POLIO

· Organize the people and help out in popular campaigns to encourage vaccination, breast feeding, and limited, sensible use of injections. Community theater and puppet shows are good ways to raise awareness on these issues. See Chapter 48.

PREVENTION of secondary problems

We have already discussed some ways to prevent new problems or complications in a child with paralysis. In summary, important measures include:

· Prevent contractures and deformities. Begin appropriate range-of-motion exercises as soon as the paralysis appears.

· At the first sign of a joint contracture, do stretching exercises 2 or 3 times a day - every day.

Stretching exercises work better if you stretch the joint firmly and continuously for a few moments,	instead of ‘pumping’ the limb back and forth.
CORRECT	WRONG We emphasize this point because in many countries parents are taught the pumping method - which does very little good.

For more details, see “Contractures,” Chapter 8.

· Evaluate the child’s needs regularly, and change or adapt aids, braces, and exercises to meet her changing needs. Too little or too much bracing can hold the child back or create new problems.

· Be sure crutches do not press hard under the arms; this can cause paralysis of the hands.

Figure

· Try not to let the child’s physical disability hold back her overall physical, mental, and social development. Provide opportunities for her to lead an active life and take part in games, activities, school, and work with other children. PART 2 of this book discusses ways to help the community meet the needs of disabled children.

OTHER PARTS OF THIS BOOK THAT MAY BE USEFUL IN MEETING NEEDS OF A CHILD AFFECTED BY POLIO *Especially important chapters are marked with a star:* Physical examination, Chapter 4 Measurement of contractures and progress, Chapter 5 * Contractures, Chapter 8 Dislocated hips, Chapter 18 Spinal curve, Chapter 20 * Range-of-motion and other exercises, Chapter 42 Crutch use, wheelchair transfers, etc., Chapter 43 Community needs, social adjustment, growing up, PART 2, especially Chapters 47, 48, 52, 53 Making sure aids and procedures meet the child’s needs, Chapter 56 * Braces and calipers, Chapter 58 * Correcting contractures, Chapter 59 Correcting club feet, Chapter 60 Special seating and wheelchairs. Chapters 64, 65, 66 * Aids for walking, Chapter 63 For more information on polio, see References.

A BOY WITH POLIO BECOMES AN OUTSTANDING HEALTH AND REHABILITATION WORKER Marcelo Acevedo was disabled by polio. He and his family lived in a village 2 days from the closest road. Village health workers from Project Piaxtla helped Marcelo get surgery for his knee contractures. After surgery he got braces and Went to school. Then they trained him as a village health worker, and he returned to serve his village. Marcelo at age 4, sitting with his older brother who was temporarily disabled when a tree fell on his leg. Marcelo training at Project Piaxtla. When PROJIMO was formed, Marcelo joined as a village rehabilitation worker. He studied brace-making as an apprentice in 2 brace shops in Mexico City. Marcelo making a plastic leg brace. Marcelo and other villagers make a plaster body mold of a young boy’s chest. The child had polio and has a severe curve of the spine. With his plastic body brace, made by Marcelo, the child can sit much straighter. Marcelo is now one of the leaders in PROJIMO, and has gained the respect of the whole village. He has recently married a village woman.

Chapter 8: Contractures: Limbs That No Longer Straighten

WHAT ARE CONTRACTURES?

When an arm or leg is in a bent position for a long time, some of the muscles become shorter, so that the limb cannot fully straighten. Or shortened muscles may hold a joint straight, so it cannot bend. We say the joint has a ‘contracture’. Contractures can develop in any joint of the body. For example:

1. Miguel spent the first years of his life crawling because one leg was paralyzed.

Figure

Because he could not stand, he kept his hip and knee bent and his foot in a tiptoe position, like this (1).

2. In time, he could not straighten his hip or knee, or bend his foot up. He had developed a:

Figure

Figure

3. Because of the contractures, Miguel could not stand or walk, even with a brace.

Figure

shortened muscles causing hip contracture (1)

Shortened calf muscles cause a tight heel cord that keeps the foot in a ‘tiptoe’ position (2).

Shortened muscles-that-bend-the-knee cause tight cords behind the knee. This keeps it bent (3).

Contractures develop whenever a limb or joint is not moved regularly through its full range of motion. This is likely when:

· a very weak or sick child is in bed for a long time.

Figure

· a paralyzed limb is kept bent or hanging.

Figure

· a child with an amputation keeps joints bent.

Figure

· a child has joint pain that prevents her from straightening her joints.

Figure

contractures in:

- neck
- shoulders
- back
- elbow
- wrists
- finger
- hips
- knees
- ankles
- feet
- toes

Why is it important to know about contractures?

· Most contractures can be prevented through exercise and other measures. Yet in many communities, at least half of the physically disabled children already have contractures.

hand paralysis with contractures

· Contractures make rehabilitation more difficult. Often they must be corrected before a child can walk or care for himself.

· Correction of contractures is slow, costly, and often very uncomfortable or painful.

· It is best not to let contractures develop, and if they do begin to develop, to correct them as soon as possible. Early contractures often can be easily corrected at home, with exercises and positioning. Advanced, old contractures are much more difficult to correct, and may require gradual stretching with plaster casts, or surgery.

For all these reasons...

Every family with a disabled child should understand how contractures develop, how to prevent them, and how to recognize and correct them when they first begin.

Muscle imbalance - a major cause of contractures

When the muscles that bend or pull a limb in one direction are much stronger than those that pull it in the opposite direction, we say there is a ‘muscle imbalance’. When paralysis, painful joints, or spasticity cause a muscle imbalance, contractures are much more likely to develop.

WITHOUT MUSCLE IMBALANCE-CONTRACTURES LESS LIKELY	WITH MUSCLE IMBALANCE-CONTRACTURES MORE LIKELY
A leg that is completely paralyzed is not very likely to develop contractures. The knee may even straighten more than normal.	If the muscles that straighten the knee (1) and lift the foot (2) are very weak, and the muscles that bend the knee and lower the foot are strong,	Muscle imbalance causing contractures can result from spasms, or spasticity, that increase the pull of certain muscles (cerebral palsy and spinal cord injury).
Figure	Figure contractures are very likely to develop.	For example, the bent elbow and crossed legs of this child with spastic cerebral palsy can lead to contractures so that his legs cannot be spread apart or his elbow straightened. Figure

To check for muscle imbalance, test and compare the strength of the muscles that bend a joint, and of the muscles that straighten it. (See muscle testing)

EXAMINING THE CHILD FOR CONTRACTURES

This is done through testing the ‘range of motion’ of different joints. Most contractures will be obvious when you test for them. But hip contractures can easily be missed.

Figure

(1) This child can lie with his right leg almost flat...

(2) ... by arching his back. You might think he has little or no hip contracture.

Figure

(1) But if you test him with his other knee bent up to his chest...

(2) ... his back flattens and you can see the amount of contracture.

Be sure to test for contractures with the leg lined up straight.

Figure

Also be sure joints do not dislocate when you test for contractures, because this can fool you, too. For example:

This child’s foot can rest on the ground,

Figure

Figure

If you hold the foot so it does not dislocate, you will see that the ankle has a severe contracture.

How to tell contractures from spasticity

Spasticity (muscle tightening that the child does not control) is common when there is damage to the brain or spinal cord. It is sometimes mistaken for contractures. It is important to know the difference.

SPASTICITY of ankle joint If at first it resists under steady pressure, and then it slowly yields, it is probably spasticity.

CONTRACTURES of ankle joint If it resists under steady pressure, and does not yield, it is probably a contracture.

Spasticity often leads to contractures.

MEASURING CONTRACTURES

This can be done by folding a paper and measuring the angle, as shown here,

Figure

and then tracing that angle onto a record sheet.

Figure

You can record your measurements with stick figures.

Figure

Or an easier, more fun way is to use a flexikin.

Figure

Or use a ‘compass’.

Figure

Or make a simple instrument of 2 thin pieces of wood joined by a bolt or rivet, tight enough so that they move stiffly.

Figure

By keeping a record of their child’s progress, a family can see the results and is more likely to keep working hard at exercises to correct a child’s contractures.

Figure

Can a contracture be straightened in the village?

Contractures usually begin with shortening of muscles, causing tight cords (tendons). Later, the nerves, skin, and ‘joint capsule’ also can become tight. (A ‘joint capsule’ is the tough covering around a joint.)

When a contracture is only in the muscles and cords, it can usually be straightened by exercises and casts at a village rehab center, although sometimes this may take months. But if the contracture also involves the joint capsule, it is often much more difficult or impossible to correct, even with many months of using casts. Surgery may be needed.

Note: If you find the information on this page hard to understand, do not worry. Come back to it later, when you meet very stubborn contractures.

TO TEST THE KNEE JOINT:

Check the range of motion of the knee with the hip straight and then bent.

Figure

Explanation: One of the main muscles that causes a knee contracture is the ‘hamstring muscle’, which runs all the way from the hip bone to the bone of the lower leg. This means that when the hip is bent, the tight muscles will bend the knee more.

Figure

If the knee straightens more when the hip is straight	hip straight
than when the hip is bent,	hip bent
probably this is a muscle contracture (a short hamstring muscle).
This can often be corrected in the village.	THE KNEE BENDS MORE: MUSCLE CONTRACTURE

But if the knee straightens equally when the hip is straight or bent,	Figure
probably there is contracture of the joint capsule.	Figure
This often requires surgery.	THE KNEE BENDS THE SAME: JOINT CAPSULE CONTRACTURE

TO TEST THE ANKLE JOINT:

Check the range of motion of the ankle with the knee straight and then bent.

Figure

Explanation: One of the main muscles that pulls the foot to a tiptoe position runs from the thigh bone all the way to the heel. This causes the heel cord to pull more when the knee is straight than when the knee is bent.

Figure

If the foot pushes down more when the knee is straight	knee straight
than when the knee is bent, it is a muscle contracture.	knee bent
This can often be corrected in the village.	THE FOOT BENDS UP MORE: MUSCLE CONTRACTURE

But if the foot angle is the same when the knee is straight or bent,	Figure
there probably is a contracture of the joint capsule.	Figure
This often requires surgery.	THE FOOT BENDS THE SAME: JOINT CAPSULE CONTRACTURE

JOINTS THAT DO NOT MOVE AT ALL

If a joint moves only a little, the joint capsule may be very tight, or there may be a deformity in the bones. With exercises, try to gradually increase the movement.

If a joint does not move at all, the bones may be ‘fused’ (joined together). This often happens when there is a lot of pain and damage in the joint. When a joint has fused, exercise will usually not bring back motion. The only surgery that might help return joint motion is to put in an ‘artificial joint’ of metal or plastic. This surgery is very costly, and if the person is very active, the joint may not last more than a few years.

PREVENTION AND EARLY MANAGEMENT OF CONTRACTURES

Contractures can often be prevented by (1) positioning, and (2) range-of-motion exercises.

POSITIONING

If a child is likely to develop contractures or has begun to develop them, try to position her to stretch the affected joints. Look for ways to do this during day-to-day activities: lying, sitting, being carried, playing, studying, bathing, and moving about.

During a severe illness (such as acute polio), or a recent spinal cord injury, contractures can develop quickly. Therefore, early preventive positioning is very important:

CORRECT	CORRECT	WRONG
Figure Lying and sleeping straight helps prevent contractures.	Figure Also use pillows for side-lying to keep a good position.	Figure Lying and sleeping with the legs in a twisted or bent position causes contractures.
(1) Lying part of the time face down helps stretch hips backward. (2) Letting feet hang over edge helps prevent ankle contractures. (3) A pillow here helps stretch knees. Figure	Figure A foot board helps to prevent ankle contractures.	Figure The foot support can be leaned forward a little So that the child can stretch his feet by pushing against it. (Be sure to pad it.)
Support feet at right angles. If knee contractures might develop, keep the knees straight as much as possible.	Figure Figure A child who spends most of the time sitting should spend part of the day lying or standing (on a frame if necessary). This will help prevent contractures of the hips and knees.
WRONG	BETTER	BEST
Figure	Figure Figure out ways to help the child stay in contracture-preventing positions.	child-sized furniture
For a child with spasticity whose legs press together or cross, look for ways to sit, lie, or carry him with his legs separated. Here are a few examples. Figure

For more ideas about special seating and positioning, see Chapter 65.

Exercises to prevent contractures

Just as cats, dogs, and many other animals stretch their bodies after they wake up, children often enjoy stretching their limbs and testing their strength. This is one of the purposes of play.

Figure

Daily stretching keeps the joints able to move smoothly and freely through their full range of motion.

Unfortunately, some children, because of illness, paralysis or weakness, are not able to stretch all parts of their bodies easily during their play and daily activities. If some part of their body is not regularly stretched or moved through its full range, contractures may develop.

To maintain full, easy movement of their joints and limbs, these children therefore need daily exercises that move the affected parts of their bodies through their full range of motion.

Range-of-motion exercises for the shoulder.

Range-of-motion exercises for each body joint are discussed in Chapter 42.

As much as possible, the child herself should try to move the affected part through its range of motion. Often the limb will be too weak and help is needed. But be sure the child moves it as much as she can herself.

Figure

Have the child move the part as far as she can without help. Then help her to move it the rest of the way.

Where there is muscle imbalance, strengthening the weaker muscles can help prevent contractures.

As much as possible, try to make exercises fun.

A child whose feet tend to bend inward like this,

may benefit from exercises that bend them outward, like this.

Walking on boards in a V-shape may provide similar stretching and be more fun.

Figure

But going with father on the V-shaped paths to the bean fields may be even more fun - and it stretches his ankles more, because it is a long way.

Figure

FOUR WAYS TO APPROACH STRETCHING EXERCISES: To prevent (or help correct) contractures, exercises can be done in 4 different ways, depending on the needs and ability of the child. These 4 ways, shown on the next page, progress from exercises where the child depends completely on help, to exercises that she does on her own as a part of everyday activity.

FOUR WAYS TO DO EXERCISES THAT STRETCH A TIGHT HEEL CORD

Figure

1. Someone else moves the limb. Often necessary - but not much fun. Figure 2. The child does his own exercises, but without using the muscles in the affected part. (This may help to prevent a contracture but will not help much to correct it.) Figure Here the child does his own stretching with some help from his mother. Figure Leaning against a wall stretches the feet more than standing upright does. Figure If the child is strong enough, bending the knees or touching the - toes is a good way to stretch the muscles that cause a tight heel cord. Figure Figure CAUTION: When doing these exercises, carefully check to see that the foot is not dislocating to the side. If so, you should use Method 1, being careful to hold the foot in such a way that it does not ‘cave in’ to the side. Figure 3. The child does the exercise-using muscles of the affected part. WITH ASSISTANCE: If the child has some strength to raise his foot, have him raise it as far as he can. Then help him to raise it as far as it will stretch. Developing the muscles that lift the foot may help prevent contracture. Figure AGAINST RESISTANCE: If the child has enough strength to raise his foot against resistance, he should do so. But be sure that the foot comes all the way up. Figure Figure 4. The child does the exercise - during normal daily activities. Figure out ways or aids so that the child can take part in ordinary activities that stretch muscles and prevent contractures. standing and walking uphill to stretch heel cords picking vegetables Figure Sewing on a machine can exercise foot and combat contractures. bar that permits child to squat and bend ankles

DIFFERENT METHODS TO CORRECT CONTRACTURES

· When contractures are just beginning to develop, stretching exercises and simple positioning may be all that is needed to correct them.

· When contractures are more advanced, stretching must be done steadily over a long time, using fixed positions, casts, braces, or special equipment that keep a continuous pull on the affected joints.

· When contractures are old and severe, correction by surgery may be needed.

Even when contractures are advanced, it is usually best to try to correct them as much as possible using simpler, less harsh methods first.

If a contracture is advanced:

Figure

First, correct it as far as you can with stretching exercises and positioning.

Figure

Second, correct it as much as possible with a series of casts or special braces.

Figure

Third, if more correction is still needed, consider surgery.

Figure

Instructions for correcting contractures using plaster casts or braces are in Chapter 59.

CAUTION: Some orthopedic surgeons are quick to recommend surgery. However, we have found that many contractures often said to need surgery can be corrected in the village or home by exercise and casting or braces. In any case, stretching exercises and bracing are often needed for a long time after surgery (or forever) to prevent the contractures from coming back. Also, some contractures are best left uncorrected (see Chapters 42 and 56). When in doubt, consult an experienced physical therapist.

Exercises to correct contractures - ‘stretching exercises’

These are similar to the range-of-motion exercises used to prevent contractures, except that steady, gentle but firm stretching is required:

1. Hold the limb in a steady, stretched position while you count slowly to 25.

2. Then gradually stretch the joint a little more, and again count slowly to 25.

3. Continue increasing the stretch in this way, steadily for 5 or 10 minutes. Repeat several times a day.

Figure

CAUTION: To avoid damaging the limb, hold it near the joint, as shown. It is acceptable if the stretching hurts the child a little, but it should not hurt him a lot. If you want faster results, do not apply more force. Stretch the limb for longer and more times each day. In children who do not feel in their legs, take special care not to stretch forcefully. You could cause injuries.

STRETCHING EXERCISE INSTRUCTION SHEETS

Some stretching exercises are done best using special techniques. Often they need to be done at home for weeks or months. You will find instruction sheets for the most frequently needed stretching exercises in Chapter 42, “Range-of-motion and Other Exercises.” They include:

Stretching exercise for a tight heel cord.

Figure

Stretching exercise for a bent knee.

Figure

Stretching exercise for a bent hip.

Figure

HOLDING A CONTRACTED JOINT IN A STRETCHED POSITION FOR LONG PERIODS

Chapter 59 discusses the use of casts, braces, and other aids to stretch difficult contractures. These include:

a series of plaster casts and wedges		adjustable braces		elastic stretching devices
Figure		of metal and plastic of wood		Figure Figure
Advantages:		Advantages:		Advantages:
	· Holds leg in exactly the position you want it. · Child (or parents) cannot easily remove it. · Especially useful for difficult deformities that bend in different directions.		· Can be adjusted by family at home. · Can be easily removed to check for sores, for bathing, and exercise.		· Same as for adjustable braces, and also: · Does not need frequent adjustment because it keeps pulling as joint stretches.
Disadvantages:		Disadvantages:		Disadvantages:
	· Cannot be easily removed to check for sores, to bathe, and to exercise. (Therefore, casts should usually not be used on children with arthritis or children without feeling in their legs.) · Hot in warm weather. · Expensive (plaster bandage). · Adjustments require trip to clinic or rehabilitation center.		· More difficult to make and to fit well. · Difficult to use on child with various deformities that go in different directions. · Child (or parents) may remove and not use it.		· Clumsy - gets in the way. · Difficult to make so they work well. · Often not good with spasticity.

HIP CONTRACTURES

Hip ‘flexion’ contractures (in which the thighs stay bent forward at the hips) are often difficult to straighten and require special techniques.

Advanced hip contractures like this often require surgery. Figure

Less advanced hip contractures like this can sometimes be straightened using positioning and straps. Figure The child lies face down with a wide strap pulling his butt down. Figure The child should spend as many hours as possible each day in this position. And if possible, also at night. Knees should be checked for early signs of pressure sores every hour or so. (See Chapter 24.)

Life can be made more interesting for the child during the weeks or months of stretching by using a lying frame on which she can move about.

Figure

(1) A rack bookholder so she can play or read.

(2) large bicycle wheels

(3) extra strong axles and hubs

(4) ‘caster’ rear wheels, for turns

(5) A bar fastened between the 2 leg casts helps keep them in a stable position (and also helps prevent contractures that pull the legs together).

(6) casts to straighten knees and ankles

CAUTION: When stretching contractures this way, be careful to prevent pressure sores (bed sores), especially on the knees. If the child complains a lot, loosen the strap a little. For eating, bathing, toilet, and exercise she can be unfastened and moved into convenient positions. But it is best that she remain strapped down about 20 out of each 24 hours.

The child with more severe contractures at the hips may need to be strapped on an angled frame.

Figure

For children with different angles of contracture in each hip, the 2 leg boards can be adjusted differently.

Figure

For additional information on contractures relating to different disabilities, aids, and equipment, see the INDEX under ‘Contractures’. For methods to correct contractures, see Chapter 59.

Chapter 9: Cerebral Palsy

WHAT IS CEREBRAL PALSY?

Cerebral palsy means ‘brain paralysis’. It is a disability that affects movement and body position. It comes from brain damage that happened before the baby was born, at birth, or as a baby. The whole brain is not damaged, only parts of it, mainly parts that control movements. Once damaged, the parts of the brain do not recover, nor do they get worse. However, the movements, body positions, and related problems can be improved or made worse depending on how we treat the child and how damaged his or her brain happens to be. The earlier we start, the more improvement can be made.

In many countries cerebral palsy is the most frequent cause of physical disability. In other countries it is second only to polio. About 1 of every 300 babies is born with or develops cerebral palsy.

How to recognize cerebral palsy

EARLY SIGNS:

· At birth a baby with cerebral palsy is often limp and floppy, or may even seem normal.

NORMAL

Child hangs in upside down ‘U’ with little or no movement.

FLOPPY

· Baby may or may not breathe right away at birth, and may turn blue and floppy. Delayed breathing is a common cause of brain damage.

· Slow development Compared to other children in the village, the child is slow to hold up his head, to sit, or to move around.

Figure

· He may not use his hands. Or he only uses one hand and does not begin to use both.

Figure

· Feeding problems The baby may have difficulties with sucking, swallowing and chewing. She may choke or gag often. Even as the child gets bigger, these and other feeding problems may continue.

Figure

· Difficulties in taking care of the baby or young child. Her body may stiffen when she is carried, dressed, or washed, or during play. Later she may not learn to feed or dress herself, to wash, use the toilet, or to, play with others. This may be due to sudden stiffening of the body, or to being so floppy she ‘falls all over the place’.

The baby may be so limp that her head seems as if it will fall off. Or she may suddenly stiffen like a board, so that no one feels able to carry or hug her.

Body stiffens like a board.

· The baby may cry a lot and seem very fussy or ‘irritable’. Or she may be very quiet (passive) and almost never cry or smile.

· Communication difficulties The baby may not respond or react as other babies do. This may partly be due to floppiness, stiffness, or lack of arm gestures, or control of face muscles. Also, the child may be slow in beginning to speak. Later some children develop unclear speech or other speaking difficulties.

Although parents find it hard to know exactly what the child wants, they gradually find ways of understanding many of his needs. At first the child cries a lot to show what he wants. Later he may point with his arm, foot or eyes.

Figure

· Intelligence Some children may seem dull because they are so limp and slow moving. Others move so much and awkwardly they may appear stupid. Their faces twist, or they may drool because of weak face muscles or difficulty swallowing. This can make an intelligent child appear mentally slow.

About half of the children with cerebral palsy are mentally retarded, but this should not be decided too soon. The child needs to be given help and training to show what she is really like. Parents can often tell that she understands more than she can show.

Figure

With help and training, some children who have been considered retarded prove to be quite intelligent.

· Hearing and sight are sometimes affected. If this problem is not recognized, the family may think that the child lacks intelligence. Observe the child carefully and test him to find out how well he can hear and see.

Even if a child can hear loud banging, he may not hear well enough to understand words.

Figure

· Fits (epilepsy, seizures, convulsions) occur in some children with cerebral palsy. (See Chapter 29.)

· Restless behavior Sudden changes of mood from laughing to crying, fears, fits of anger, and other difficult behavior may be present. This may partly be due to the child’s frustration of not being able to do what he wants with his body. If there is too much noise and activity the child can become frightened or upset. The brain damage may also affect behavior. These children need a lot of help and patience to overcome their fears and other unusual behavior. (See Chapter 40.)

· Sense of touch, pain, heat, cold, and body position are not lost. However, the children may have trouble controlling movements of their bodies and trouble with balance. Because of their damaged brains they may have difficulty learning these things. Patient teaching with lots of repetition can help.

· Abnormal reflexes Babies have certain ‘early reflexes’ or automatic body movements that normally go away in the first weeks or months of life. In children with brain damage, they may last much longer. However, these are only important if they affect how the child moves. ‘Knee jerk’ and other tendon-jump reflexes are usually over-active (jump higher than normal). If you are not sure, testing for abnormal reflexes may help you tell cerebral palsy from polio.

TYPES OF CEREBRAL PALSY

Cerebral palsy is different in every child. Different experts have worked out different ways of describing it. But do not worry about labeling a child’s particular type of cerebral palsy. This does not usually help his treatment.

It is helpful, however, to recognize 3 main ways that cerebral palsy can appear. In a particular child, it may appear in one or another of these ways - but usually in some sort of combination.

1. MUSCLE STIFFNESS OR ‘SPASTICITY’

The child who is ‘spastic’ has muscle stiffness, or ‘muscle tension’. This causes part of his body to be rigid, or stiff. Movements are slow and awkward. Often the position of the head triggers abnormal positions of the whole body. The stiffness increases when the child is upset or excited, or when his body is in certain positions. The pattern of stiffness varies greatly from child to child.

TYPICAL SPASTIC POSITIONS WHEN LYING ON THE BACK:

Figure

Stiffness, with the knees bent or with legs separated, occurs more commonly in the child with spasticity and athetosis combined (see below).

Figure

Less commonly the head and shoulders may stiffen forward...

Figure

... or the arms may stiffen straight across the body, with the head pressed back.

Figure

Figure

When you try to stand the child the legs often stiffen or cross like scissors (1).

Figure

The child who learns to walk may do so in a stiff, awkward position, with the knees pulled together and bent (1). Feet often turn in.

2. UNCONTROLLED MOVEMENTS OR ‘ATHETOSIS’

These are slow, wriggly, or sudden quick movements of the child’s feet, arms, hands, or face muscles. The arms and legs may seem jumpy and move nervously, or just a hand or the toes may move for no reason. When he moves by choice, body parts move too fast and too far. Spastic movements or positions like those shown above may continually come and go (constantly changing muscle tension). His balance is poor and he falls over easily.

Most children with athetosis have normal intelligence, but if the muscles needed for speech are affected, it may be hard for them to communicate their thoughts and needs.

Typical athetoid arm and hand movements may be as a regular shake or as sudden ‘spasms’. Uncontrolled movements are often worse when the child is excited or tries to do something.

Figure

This child has severe athetosis.

3. POOR BALANCE OR ‘ATAXIA’

The child who has ‘ataxia’, or poor balance, has difficulty beginning to sit and stand. She falls often, and has very clumsy use of her hands. All this is normal in small children, but in the child with ataxia it is a bigger problem and lasts longer (sometimes for life).

Because children who have mainly a balance problem often appear more clumsy than disabled, other children are sometimes cruel and make fun of them.

To keep her balance the child with ataxia walks bent forward with feet wide apart. She takes irregular steps, like a sailor on a rough sea or someone who is drunk.

Figure

TEST FOR ATAXIA: Hold a finger or a toy in front of the child and ask him to touch it on the first try. The child with ataxia cannot do it. Figure

Many children who have spasticity or athetosis also have problems with balance. This may be a major obstacle in learning to walk. However, much can often be done to help a child improve her balance.

NOTE: Children with any type of cerebral palsy as babies are often mainly limp or floppy. Stiffness or uncontrolled movements begin little by little. Or the child may be limp in some positions and stiff in others.

Parts of the body affected

DEPENDING ON WHICH LIMBS ARE INVOLVED, THERE ARE 3 TYPICAL PATTERNS:

ARM AND LEG ON ONE SIDE (HEMIPLEGIC)

BOTH LEGS ONLY (PARAPLEGIC) or with slight involvement elsewhere (DIPLEGIC)

BOTH ARMS AND BOTH LEGS (QUADRIPLEGIC)

Although most cerebral palsy children fit one or another of these patterns, check also for minor problems in other parts of the body.

QUESTIONS ABOUT CEREBRAL PALSY

1. What causes it?

In each child with cerebral palsy, the parts of the brain that are damaged are different. The causes are often difficult to find.

· Causes before birth:

· Infections of the mother while she is pregnant. These include German measles and shingles (herpes zoster).

· Differences between the blood of mother and child (Rh incompatibility).

· Problems of the mother, such as diabetes or toxemia of pregnancy.

· Inherited. This is rare, but there is a ‘familial spastic paraplegia’.

· No cause can be found in about 30% of the children.

· Causes around the time of birth:

· Lack of oxygen (air) at birth. The baby does not breathe soon enough and becomes blue and limp. In some areas, misuse of hormones (oxytocics) to speed up birth narrows the blood vessels in the womb so much that the baby does not get enough oxygen. The baby is born blue and limp - with brain damage.

· Birth injuries from difficult births. These are mostly large babies of mothers who are small or very young. The baby’s head may be pushed out of shape, blood vessels torn, and the brain damaged.

· Prematurity. Babies born before 9 months and who weigh under 2 kilos (5 pounds) are much more likely to have cerebral palsy. In rich countries, over half the cases of cerebral palsy happen in babies that are born early.

· Causes after birth:

· Very high fever due to infection or dehydration (water loss from diarrhea). It is more common in bottle-fed babies.

· Brain infections (meningitis, encephalitis). There are many causes, including malaria and tuberculosis.

· Head injuries.

· Lack of oxygen from drowning, gas poisoning, or other causes.

· Poisoning from lead glazes on pottery, pesticides sprayed on crops, and other poisons.

· Bleeding or blood clots in the brain, often from unknown cause.

· Brain tumors. These cause progressive brain damage in which the signs are similar to cerebral palsy but steadily get worse.

2. Is cerebral palsy contagious? No! It cannot be passed from one child to another.

3. Can persons with cerebral palsy marry and have children? Yes. And the children will not have the condition (except maybe in a very rare type of cerebral palsy).

4. What medical or surgical treatment is there?

Except for drugs to control fits, medicines usually do not help. (Although medicines to reduce spasticity are often prescribed, they usually do no good, and may cause problems.) Surgery is sometimes useful for correcting severe, stubborn contractures. However, surgery to weaken or release spastic muscles is less often effective and sometimes makes things worse. Careful evaluation is needed. Surgery usually should be considered only if the child is already walking and has increasing difficulty because of contractures. In a child who cannot balance well enough to stand, surgery usually will not help. Sometimes surgery to separate the legs can help make cleaning and bathing easier.

5. What can be done?

The damaged parts of the brain cannot be repaired, but often the child can learn to use the undamaged parts to do what she wants to do. It is important for parents to know more or less what to expect:

The child with cerebral palsy will become an adult with cerebral palsy. Searching for cures will only bring disappointment. Instead, help the child become an adult who can live with her disability and be as independent as possible.

Families can do a lot to help these children learn to function better. Generally, the child who is more intelligent will learn to adapt successfully to her condition. However, intelligence is not always necessary. In fact, some intelligent children become more easily frustrated and discouraged, so they stop trying. Extra effort is needed to find new and interesting ways to keep them progressing. Even severely retarded children can often learn important basic skills. Only when mental damage is so great that the child does not respond at all to people and things is there little hope for much progress. However, before judging the child who does not respond, be sure to check for deafness or loss of eyesight.

IMPORTANT: Rather than try to treat the symptoms of cerebral palsy, we can do more for the child if we help her with development of movement, communication, self-care and relationships with others. Sometimes we can partly correct the symptoms through helping the child develop basic skills.

Family members can learn to play and do daily activities with the child in ways that help her both to function better and to prevent secondary problems such as contractures.

Most important is that the parents (and grandparents!) learn not to do everything for the child. Help her just enough that she can learn to do more for herself.

By standing on her knees as she paints a sign, this girl is improving her balance to help her (possibly) stand and walk.

Figure

For example, if your child is beginning to hold up her head, and to take things to her mouth,

instead of always feeding her yourself

look for ways to help her begin to feed herself.

6. Will my child ever be able to walk?

This is often one of the biggest concerns of parents. Walking is important both functionally and socially. But in terms of the child’s needs, other skills may be more important. For the child to lead as happy, independent a life as possible, necessary skills and accomplishments (in order of importance) are:

1. Having confidence in yourself and liking yourself
2. Communication and relationship with others
3. Self-care activities such as eating, dressing, toileting
4. Getting from place to place
5. (And if possible) walking

We all need to realize that walking is not the most important skill a child needs - and it is certainly not the first. Before a child can walk he needs reasonable head control, needs to be able to sit without help, and to be able to keep his balance while standing.

Most children with cerebral palsy do learn to walk, although often much later than normal. In general, the less severely affected the child is and the earlier she is able to sit without help, the more likely she is to walk. If she can sit without assistance by age 2, her chances for walking may be good - although many other factors are involved. Some children begin to walk at age 7, 10, or even older.

Hemiplegic and diplegic children usually do learn to walk, although some may need crutches, braces, or other aids.

Many severely affected children may never walk. We need to accept this, and aim for other important goals. Whether or not the child may someday walk, he needs some way to get from place to place. Here is a true situation that helped us to realize that other things are more important than walking.

The legs stiffen and the feet go into a rigid tiptoe position. This child is not almost ready to walk. Figure A COMMON MISTAKE When a child with severe brain damage is held like this, her legs may automatically stiffen and her feet point down - the so-called ‘tiptoe reflex’. Because the feet sometimes take jerky ‘steps’, parents think the child is ‘almost ready to walk’. This is not so. The tiptoe reflex must be overcome before the child can begin to learn to walk. Do not hold the child in this position or make her try to walk. It will only strengthen this disabling reaction.

In a Mexican village, we know 2 brothers, both with cerebral palsy.

Petronio walks but with great difficulty. Walking tires him and makes him feel so awkward that he stays at home and does not play or work. He is unhappy.

Figure

His brother, Luis, cannot walk. But since he was small, he has loved to ride a donkey. He uses a wall to get off and on by himself. He goes long distances and earns money carrying water. He is happy.

Figure

(Not only does the donkey take Luis where he wants to go, but by keeping his legs apart, it helps prevent knock-knee contractures. This way ‘therapy’ is built into daily activity.)

There are many different ways to help children who cannot walk, or who walk with difficulty, get where they want to go. These include wheelboards, wagons, wheelchairs, special walkers, and hand-pedal tricycles. Many of these are described in PART 3 of this book (see the Index).

How can we help?

First, with the help of parents and family we observe the child carefully to see:

· what the child can do.
· what he looks like when he moves and when he is in different positions.
· what he cannot do, and what prevents him from doing it.

A village worker and father examine a child with severe cerebral palsy.

WHAT THE CHILD CAN DO

Can the child:

· lift her head? hold it up? sit? roll over?
· pull herself along the floor in any way possible? crawl? walk?

How does the child use her hands?

· Can she grasp things and hold on; let go; use both hands together (or only one at a time)?
· Can she use her fingers to pick up small stones or pieces of food?

How much can the child do for herself?

· Can she feed herself; wash herself; dress herself? Is she ‘toilet trained’?

What can the child do in the home or in the fields to help the family?

After observing and discussing what the child can do, we must expect him to do these things. If the parents are used to doing almost everything for the child, at first this may be difficult (for both parents and child). But soon it will help the child have more confidence. The parents, also, will be encouraged by seeing what he can do for himself, and they will think less about what he cannot do. Here a grandmother helps her grandchild became more self-reliant:

Figure

Figure

It was difficult for the grandmother not to bring her grandson a cup of water - especially when he begged her. But she understood that in the long run it would do him more good to manage for himself. For more ideas about how a family can help a child with cerebral palsy, read the story of Maricela on pages 5 to 7 and the story of Enrique.

HELPING THE CHILD ACHIEVE BETTER POSITIONS

Due to abnormal pull of muscles, children with cerebral palsy often spend a lot of time in abnormal positions. These abnormal positions of the limbs and body should be avoided as much as possible, or the child can become deformed. For example,

Figure

A wrist (1) or elbow (2) that is always bent can lead to contractures (muscle shortening) that make it impossible to straighten the arm or hand.

Hips (3) that are continually bent forward, or to one side, or knees (4) that are always held together, or never completely straightened, or feet (5) that are always ‘tiptoe’, can lead to contractures that prevent the normal range of movement. This can make washing, dressing, toileting, and moving about much more difficult.

Figure

A twisted position can lead to curvature of the spine and tilting of the hips (6).

If the head is always turned or bent to one side (7), in time the neck may become permanently twisted.

An arm that is held tightly to the side will in time become difficult to raise away from the side (8).

Whenever possible the child should be in positions that prevent rather than cause these problems. Whatever the child is doing (lying, sitting, crawling, standing) try to encourage positions so that:

· her head is straight up and down.
· her body is straight (not bent, bowed, or twisted).
· both arms are straight and kept away from the sides.
· both hands are in use, in front of her eyes.
· she bears weight equally on both sides of her body - through both hips, both knees, both feet or both arms.

sitting

crawling

lying

standing

Encourage positions that the child can manage at her stage of development. Play with her, talk with her, give her interesting things to do in these positions.

Not all children will be able to stay in these positions without some kind of support. Special chairs, tables, wedges, pads, or bags of clean sand may be needed to keep a good position.

For example, the child at the top of the page might need a chair like this.

Figure

Note: Remove straps and supports as soon as the child is able to stay in a good position.

WARNING: Do not leave a child in any one position for many hours as his body may gradually stiffen into that position. Change his position often. Or better, encourage him to change it. If he can change his own position effectively, then chairs, seats, and other aids must not prevent him from moving. AIDS SHOULD RESTRICT A CHILD’S MOVEMENT AS LITTLE AS POSSIBLE.

When the child with cerebral palsy moves she may do so in a very strange or abnormal way. To some extent this should be allowed, as long as the child is able to do things as best she can. But also show the child other ways to move in order to correct some of the abnormal positions that she repeats again and again. For example,

If her arm repeatedly bends up,

Figure

encourage her to reach out and hold objects.

Figure

Or she may need a post to hold on to.

Figure

If she bends backward a lot,

Figure

Figure

she needs actions that bend her head, body, and shoulders forward, like these (1).

Corrective actions and positions can be found while working in the fields, in the home, or while playing with brothers and sisters. Here are some more suggestions for corrective positions (from physical therapists Nancy Finnie and Sophie Levitt).

Lying and sleeping

Try to find ways for the child to be in positions that correct or are opposite to his abnormal ones.

Figure

Figure

Figure

If the child’s body often arches backward,

Figure

try positioning him to lie and play on his side.

Figure

Look for ways to break the spasticity by bending him forward,

Figure

or over a barrel (or beach ball or big rock, etc.),

Figure

or in a car tire swing.

Figure

If the child does not have enough control to reach out in this position,

Figure

help position him so he can lift his head using his arms.

Figure

Figure

If the child’s head always turns to the same side,

Figure

do not have him lie so that he turns his head to that side to see.

WRONG

Instead, have him lie so that he has to turn his head to the other side to see the action.

RIGHT

Rolling and twisting

A child with cerebral palsy is often very stiff when it comes to twisting or rotating the main part of her body. However, such twisting is necessary for learning to walk. Rolling also helps develop body twisting.

If the child is very stiff, first help her ‘loosen up’ by swinging her legs back and forth.

Figure

Then help her learn to twist her body and roll.

Figure

Figure out games so that the child wants to twist, and does it without help.

Figure

Figure

Sitting

The way that you help position a child for sitting also depends on the type of abnormal body positions he has. For example,

If his legs push together and turn in, and if his shoulders press down and his arms turn in,

Figure

sit him with his legs apart and turned outward.

Also lift his shoulders up and turn his arms out.

Figure

Look for simple ways to help him stay and play in the improved position without your help.

Figure

Sitting with the legs in a ring helps turn hips outward.

Figure

For the child with spasticity who has trouble sitting, you can control his legs like this. This leaves your hands free to help him control and use his arms and hands. Help the child feel and grasp parts of his face.

Figure

Sit the child on your belly with his legs spread and feet flat. Give support with your knees as needed. As he begins to reach for his face, help his shoulders, arms, and hands take more natural positions. Make a game out of touching or holding parts of his face. MAKE IT FUN!

Figure

As the child develops, encourage her to put her arms and body in more normal positions through play and imitation.

Figure

Children who have trouble with balance (from cerebral palsy, polio, or other disability) often sit with their legs in a ‘W’ in order not to fall over.

Figure

Sitting in a “W” should usually be discouraged because it can increase contractures and loosen or damage hips and knees. However, if it is the only way a child can sit and use her hands, it should be allowed.

Figure

Look for ways for the child to sit with legs spread forward. Here are 2 examples.

The pot or log keeps the knees apart. The holes for heels help too.

Figure

Figure

If the child’s legs stay apart, his butt sticks out, and his shoulders are pulled back,

Figure

first sit him with his body bent forward and his legs together. Then bend his shoulders forward and turn them in.

Figure

A sack of grain provides a roll to hold this child’s legs apart. Her father pushes down on her knees. This helps her to hold her feet flat and sit up straighter. (PROJIMO)

Figure

Look for ways that the child will sit and play in the improved position without help.

Play with her at a table. Sit across from her to have her reach forward for toys with both hands.

Figure

Be sure her feet are on a flat surface.

Figure

For ideas on special seats and sitting positions to prevent ‘knock-knee’ contractures, see below.

Moving about

Because children with cerebral palsy are usually delayed in walking, they need other ways to get from place to place. The methods used will depend on both the needs and abilities of the child - also the resources, skills, and imagination of family, friends, and local craftspersons.

Aids for ways to get from place to place should provide corrective positions. The following examples are all designed to help prevent ‘knock-knee’ contractures. They also provide other types of corrective positioning.

Figure

Figure

Figure

Wheel boards

Adapting wheel boards for travel on rough surfaces

Figure

By placing large wheels (1) near the middle, if the smaller front caster gets stuck, the child can lift with his arms and go on. Or if a fixed front wheel is used, he can lift it off the ground to make turns.

For dirt or bamboo floors, larger wheels will be needed.

Some children will need wheelchairs. For wheelchair designs, see Chapters 64, 65 and 66.

Figure

Standing

Many children with cerebral palsy stand and walk in strange positions. A child’s unsure balance often increases the uncontrolled tightening of certain muscles and makes balance even more difficult.

As a result the child stands in an awkward position that can lead to deformities and contractures.

Figure

When you help the child keep her balance, she is less tense and can stand straighter.

Figure

Look for ways to provide similar assistance during play and other activities.

Here a cart provides easier balance and keeps the arms straight.

Figure

Miguelito began to walk at age 8 - first on parallel bars.

Soon he learned to use crutches. Here he races another child who is learning to walk.

And now he can walk alone.

Two sticks can help the child once she develops some standing balance. At first you can hold the tops of the sticks. But let go as soon as possible.

Figure

CAUTION: Be sure sticks are taller than child so that she will not injure herself if she falls.

The child who cannot yet stand alone can be placed in a standing frame for an hour or 2 each day.

Figure

Figure

Figure

Even for the child who may never stand alone or walk, standing in a frame helps prevent deformities. It also helps the leg bones grow and stay strong. Start at about the age normal children begin to stand - around one year old.

Hand use

Try to find ways that the child can play or do things using her hands while she is in the corrective positions of sitting, standing or lying.

Encourage her to touch, feel, and handle as many different shapes and surfaces as possible: things that are big, small, hot, cold, sticky, smooth, prickly, hard, soft, thin, and thick.

This girl in the rehabilitation center of the Khao-i-dang refugee camp in Thailand develops hand control by sliding colored rings on a pole.

Figure

A boy with cerebral palsy at the PROJIMO rehabilitation center helps paint a chair frame.

CORRECTIVE CARRYING POSITIONS

As in other activities, try to carry a child in positions that work to correct abnormal positions.

If the child usually lies with arms bent and legs straight,

Figure

do not carry him like this.

Carry him in ways that straighten his arms and bend his knees and hips.

Figure

As the child gains more control, you can carry him with less support.

Figure

The child with spasticity who is usually curled up, Figure can be carried like this. Figure

The child with severe spasticity who tends to straighten and arch backward can be carried like this.

Figure

For play, you can swing the child in the air in this position.

Figure

Figure

CONTRACTURES IN CEREBRAL PALSY

Abnormal muscle tightness often leads to contractures (muscle shortening and reduced motion of joints, see Chapter 8). In time, the muscles that keep a limb bent become shortened so that the limb cannot straighten even when the muscles relax. But with care, contractures can often be prevented.

Without care to prevent it:
SPASTICITY (Uncontrolled tightening of muscles)	leads to ®	CONTRACTURE (Fixed shortening of muscles)

The typical contractures of cerebral palsy are similar to the abnormal positions of cerebral palsy. They can include:

Figure

(1) neck contractures that pull the head back or to one side
(2) sway back
(3) bent-hip contracture
(4) bent-knee contracture
(5) ‘tiptoe’ contracture
(6) An arm and hand that are always bent may cause contracture of elbow and wrist.
(7) ‘knock-knees’ contracture
(8) Ankle and toot contractures may bend IN, DOWN, UP or OUT depending on the spasticity.

Stretching the knees apart you can see and feel the very tight cord in the groin.

Figure

Chapter 8 discusses contractures, and ways to prevent and correct them. Page 79 explains how to tell spasticity from contractures.

Spasticity and contractures combined

Decreased range of motion may be caused partly by spasticity and partly by contractures. Therefore, whenever a child has spasticity, check to see if contractures are also forming, and if so, how much.

This girl with cerebral palsy has spastic muscles that hold her knees tightly together.

Figure

Figure

When she is helped to relax and her legs are slowly separated, they will only open this far (1).

Normally her legs should open this far (2). This means she has contractures on the inner side of her thighs (groin).

One way to record spasticity and contractures:

Normal

With Contracture

With Spasms

You can use a flexikin to record the positions.

Figure

PREVENTING CONTRACTURES

In cerebral palsy, it is important that steps to prevent contractures be included in activities that help the total development of the child. Many of the corrective positions we have already suggested for activities such as lying, sitting, standing, and moving about are helpful in preventing contractures. When there are signs of developing contractures, give even more time and care to corrective positions.

Range-of-motion exercises

Although the reasons contractures form in cerebral palsy and polio are different, many of the stretching and holding exercises discussed in Chapter 8, “Contractures,” and in Chapter 42, “Range-of-Motion and Other Exercises,” will be helpful. However, in cerebral palsy, take care to do exercises in ways that do not increase spasticity, but help to relax the spastic muscles.

RELAXING SPASTIC MUSCLES

To help relax spastic muscles, before beginning range-of-motion exercises try the following to see what works best for your child:

1. Apply warm soaks to spastic muscles or have the child sit or lie in warm water.

Figure

2. Slowly twist or help the child to twist his body from side to side. This reduces spasticity throughout the body, and is a good first stretching exercise: Make it into a game.

Figure

CAUTION ABOUT MASSAGE In some countries, people and even therapists use massage, or rubbing, to try to relax spastic muscles. Although massage often helps relax muscle spasms, cramps, or tight muscles from other causes, in spasticity, massage usually increases the muscle tightness. As a general rule. DO NOT MASSAGE SPASTIC MUSCLES.

Pulling or pushing directly against spastic muscles causes them to tighten more. To correct abnormal positions, sometimes you can use ‘tricks’ to release or ‘break’ the muscle spasms.

Muscle tension in any part of the body is affected by the position of the head and body. Spasms that straighten the legs and pull the knees together can be partly relaxed by bending the head and back forward.

Do not pick up the child like this. Her head will bend back and her whole body and legs stiffen more.

WRONG

If you roll her a little to one side, it will be easier to bend her head and back forward, This relaxes her hips and legs so that they also bend.

RIGHT

Whatever you do with the child, look for ways that will help relax and stretch the tight muscles. Here are some examples.

Rosa’s body stiffens backward, while her knees straighten stiffly and press together.

To wash between her legs, do not try to pull her legs apart at the ankles.

This will make her legs pull together more tightly

WRONG

Instead, put something under her head and shoulders to bend them forward. This helps to relax the stiffness in her whole body.

Then bend the legs and slowly separate them. If you hold them above the knees, they will open more easily

Figure

Washing will be easier with her knees bent. After washing her (with warm water, if possible) you can help stretch the tight muscles.

Slowly open her legs as wide as they will go, and then gradually straighten her knees.

Figure

When you try to feed the child, if her head and shoulders stiffen backward,

Figure

do not try to pull her head forward. It will push back more.

WRONG

You may find that her head relaxes more if you put your arm across the back of her neck and push her shoulders forward.

Figure

Or, you may find that raising the front of the chair seat keeps her hips bent, relaxes her in general, and gives her much more control.

Figure

When you want to help your child dress, if her arms press against her chest,

Figure

do not try to pull them straight. They will stiffen more.

WRONG

Try holding her arms above her elbows, and gently turning her arms out and straighten them at the same time.

Figure

Note: These suggestions will work for some children but not for others. Keep trying different ways until you find what works best.

DEVELOPING EARLY SKILLS

Most children with cerebral palsy develop basic skills and abilities more slowly than other children. This is partly because of their difficulty with balance and movement. Also, in some children, mental slowness or problems with seeing or hearing make learning more difficult. Because slow development occurs with many different disabilities, we discuss activities for child development in a separate section of this book.

In this chapter, therefore, we give only a few suggestions for assisting a child with cerebral palsy to learn new skills.

VERY IMPORTANT: To understand better how to help a child with cerebral palsy develop early skills, you also need to read other chapters. Chapters 34 and 35 are about helping the child whose mind and/or body are slow to develop. Chapters 36 to 41 discuss ways of helping children develop and become more self-reliant. Although Chapters 34 to 41 are written to help any children who are slow to develop, many suggestions are included for the specific needs of the child with cerebral palsy. These are marked with in the margin.

To help a child develop new skills, first observe all the things that she can and cannot do. Like a normal baby who progresses stage by stage in a certain order, the child with cerebral palsy must do the same. Charts showing the normal ‘developmental milestones’ are on pages 292 and 293. You can use them to help decide the next steps or skills that the child may be ready to learn.

Help the child advance slowly, at her own speed, in small steps. If we try to go too fast because of her age, she can become discouraged by failure. Also, her progress can be held back. This happens when we stand a child and try to make him walk before he is ready.

Move ahead at a speed that fits your child - not too fast and not too slow.

To help a child with cerebral palsy develop skills takes a lot of time, energy, patience, and love. The whole family needs to help, and also, if possible, others in the community. (See Chapter 33.)

Remember that positioning is very important. When the child has been helped to lie, sit, and stand in ways that give him better positions and control, he will start learning to do things he could not do before.

Good balance is one of the most important goals for the development of the child with cerebral palsy. It is important to help a child improve her balance from as young an age as possible. At each stage of the child’s development - lying, sitting, creeping, standing, and walking - better balance is needed to progress to the next stage.

Helping improve balance

Detailed suggestions of activities to improve balance are included in Chapter 35, “Early Stimulation Activities,” especially pages 306 to 312. Here we give you a brief look at some of the basic suggestions explained in more detail in that chapter.

TESTING A CHILD’S BALANCE
POOR BALANCE	BETTER BALANCE	GOOD BALANCE
If when you sit a child over 10 months old, she falls stiffly to one side with no effort to ‘catch’ herself, her balance is poor.	If she can balance using her arms when you gently push her, her balance is fair.	If she can do it by bending her body, without using her arms, her balance is good.

When lying

Encourage the child to shift weight from one arm to the other by reaching for objects,

reaching forward,

Figure

and reaching sideways.

Figure

Lie him on your body and tip a little from side to side so that he begins to catch himself.

Figure

When sitting

Let her start to fall so that she begins to catch herself.

Figure

Sit her across your knees. Raise one knee so she has to balance.

Start with hands high.

Then lower your hands.

As the child improves, use a tilting board.

Figure

Encourage the child to twist and reach to the side.

Figure

Use as little sitting support as needed. Often low back support is enough for a child who straightens stiffly

Figure

For creeping and crawling

Note: Some children advance to standing without ever crawling.

Shift weight from one arm to the other. Provide support as needed, and gradually take it away

Figure

Figure

Shift weight from one leg to the other.

Figure

Play trying to balance on a tipping surface.

Figure

Crawl forward, sideways, and backward.

Figure

crawling scooter

For standing and walking

Stand and balance on knees.

Figure

CAUTION: Not for a child with bent-knee spasticity.

Pull to stand.

(Often the child will stand better when he pulls himself up than when someone helps him.)

Stand while holding on, and reaching.

Figure

Help with standing and then walking.

Figure

Give less and less support while he walks with only a ‘safety-belt’-and then alone.

Figure

Have the child practice stepping forward, backward, and sideways.

Figure

Whenever possible, turn these activities into games. Talk to the child a lot while you do them to help develop language skills at the same time.

Skills for daily living and self care

A child with cerebral palsy will get abilities later than other children - but she will get them! Of course, the child may not achieve everything, and may not always walk. But make sure the child achieves what she can in each important area of development:

The child will often need a lot of help with language and communication skills. Develop these skills in whatever way seems possible: using words, gestures, pointing (with hand, foot, head, or eyes), or with communication boards. (See Chapter 31)

Figure

Help the child become as independent as possible in eating, dressing, washing, toileting, and in meeting other daily needs. Do this by guided practice, imitation, and step-by-step learning. These self-care skills are discussed in Chapters 36 to 39.

Develop some form of moving about and, if necessary, use wheel-boards, wheelchairs, pedal tricycles, walkers, crutches, or other aids. (See Chapters 63, 64, 65, and 66.)

Keep experimenting until you find what works best.

For example, this girl, with poor body and hip control, tends to ‘fall through’ the space between her arms when the handgrips on the walker are upright.

Figure

She does much better on a higher walker with a handgrip that runs from one side to the other.

Figure

Often leg braces do not help a child with cerebral palsy walk better. But sometimes they do. When in doubt, try low-cost braces first, to look for possible problems. For example:

Carla walks in a very crouched position.

Figure

She may be helped by below-knee braces that hold her feet at nearly a right angle (90°)

Figure

or by above-knee braces that keep her knees almost straight...

Figure

But it is possible that the below-knee braces will throw her badly off balance,

Figure

and that the above-knee braces will make balancing even harder.

You will need to experiment!

Figure

Even if braces for walking do not work, Carla may be helped to walk straighter by using ‘night splints’ to hold her knees straight and prevent contractures.

IMPORTANT: Practice in learning skills should take place with family and friends so that the child develops skills in relating to others. However, the child will also need time to practice her skills alone and with the person who is mainly responsible for treating or teaching her.

CAUTION: Many suggestions for developing basic skills are discussed in Chapter 34, “Child Development and Developmental Delay,” and Chapters 36 through 39 on developing skills for self-care. However, for the child with cerebral palsy, some of these activities will need to be done differently to help reduce and not increase muscle spasms. If any activity increases spasticity, try it differently until you find a way that reduces muscle tension and improves position.

PREVENTION

With these precautions, children will be less likely to have cerebral palsy:

· Good nutrition of the mother, both before and during pregnancy, reduces the chance of premature birth - and of cerebral palsy.

· If possible, girls should avoid pregnancy until full grown (16 or 17 years old).

· Avoid unnecessary medicines during pregnancy.

· Try to avoid getting near persons with German measles during pregnancy. Or get vaccinated against German measles before becoming pregnant.

· Go for regular health check-ups during pregnancy (prenatal care). If there are any signs that giving birth may be difficult, try to arrange for a skilled midwife or doctor to attend the birth - if possible, in a hospital. (See the list of “Signs of Special Risk,” Where There Is No Doctor, p. 256.)

· During labor, do not let the midwife try to speed things up by,

pushing forcefully against the womb,

or by using injections or hormones (oxytocin, pituitrin, etc.) before the child is born.

· Be familiar with, and be sure your midwife is familiar with, all the precautions and emergency measures of childbirth. Learn what to do if the baby is born blue and limp and does not breathe right away, or has the cord wrapped around the neck. (See Where There Is No Doctor, p. 262.)

· Breast feed the baby (breast milk helps prevent and fight infection), and make sure the baby gets enough to eat. (See Where There Is No Doctor, p. 121 and 271.)

· Vaccinate the baby (especially for measles).

· When the baby has a fever,

uncover him completely.

If the fever is high, wet the child and fan him until he is cooler.

Never wrap the baby up in clothing or blankets.

Figure

This can make the fever worse and cause fits or permanent brain damage.

Be sure the child with fever drinks a lot of liquids, and follow the other instructions on pages 75 to 76 of Where There Is No Doctor.

· Know the signs of meningitis and get (or begin) treatment quickly.

Figure

· When your baby has diarrhea, prepare Rehydration Drink and give it to him every few minutes to prevent or correct dehydration. See Where There Is No Doctor, p. 151 to 161.

Preventing dehydration helps prevent fits and brain damage (cerebral palsy).

Figure

OTHER PARTS OF THIS BOOK WITH INFORMATION CONCERNING CEREBRAL PALSY

Cerebral palsy is a complex disability that involves many problems and needs. Therefore much of the basic information you will need is in other chapters. It is essential that you read Chapters 4, 8, 33 to 43, and 62 to 66.

Throughout the book, important information about cerebral palsy has been marked with a in the margin. Many references to cerebral palsy are also included in the INDEX.

Chapter 10: Muscular Dystrophy: Gradual, Progressive Muscle Loss

Muscular dystrophy is a condition in which muscles, month by month and year by year, get weaker and weaker. Because the disability gradually gets worse, we say it is ‘progressive’.

HOW TO RECOGNIZE IF MUSCLE WEAKNESS IS CAUSED BY MUSCULAR DYSTROPHY

· Mostly affects boys (rarely girls).

· Often brothers or male relatives have same problem.

· First signs appear around ages 3 to 5: the child may seem awkward or clumsy, or he begins to walk ‘tiptoe’ because he cannot put his feet flat. Runs strangely. Falls often.

· Problem gets steadily worse over the next several years.

· Muscle weakness first affects feet, fronts of thighs, hips, belly, shoulders, and elbows. Later, it affects hands, face, and neck muscles.

· Most children become unable to walk by age 10.

· May develop a severe curve of the spine.

· Heart and breathing muscles also get weak. Child usually dies before age 20 from heart failure or pneumonia.

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Early common sign of muscular dystrophy

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· To get up from the ground, the child ‘walks up’ his thighs with his hands.

This is mainly because of weak thigh muscles.

QUESTIONS ABOUT MUSCULAR DYSTROPHY

How common is it? It is not very common. Rehabilitation centers may see one child with muscular dystrophy for every 30 or 40 with cerebral palsy or polio.

What causes it? Nobody knows. But in 2 out of 3 families with muscular dystrophy, there is a history of it among male relatives of the mother. Though the parents are usually normal, the mother carries the ‘gene’ that produces dystrophy in her sons. Her daughters will develop normally, but they may have sons with muscular dystrophy.

What treatment is there? None. No medicines help. Special therapy or exercises will not stop the weakness from increasing. Surgery to release tiptoe contractures is at best of temporary benefit.

The family can, however, do much to help the child make the best of his life and adapt to his limitations as they progress.

Also, activities, exercises and braces to prevent contractures may help the child to keep walking longer. If the child sits in a bad position, pillows or supports to help him sit straighter can help prevent deformities.

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Is the child’s mind affected? About half of these children are somewhat mentally retarded (slow learners); some are very intelligent.

What can be done? The family can do many things to help the child live more fully and happily. The child should remain active and continue normal activities for as long as possible. Play with other children is important. So are learning and exploring. The child should go to school. Encourage other children to help him with learning and play. The teacher should realize that some - but not all - children with dystrophy learn a little more slowly than normal. Try to include the child in as many family and community activities as possible.

The steadily increasing weakness and the lack of effective treatment will be hard for both the family and child to accept. Friendly assistance, advice, and encouragement from health workers and friends can be a big help. Help the family to look at the situation honestly, and to do their best.

A boy with muscular dystrophy paints the top of his wheelchair table. Although he cannot lift his arm without help, a simple ‘arm rocker’ made of foam plastic lets him move it in all directions. It also allows him to feed himself.

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The goal of the family is to help the child be as active and happy as possible, and to adjust to his increasing limitations.

Helping the child to keep walking for as long as possible

Exercise. To keep as strong as possible and prevent contractures, probably the best therapy, at least at first, is to stay active, to walk, run, and play. While range-of-motion and stretching exercises may help (see Chapter 42), it is even better to involve the child in games, work, and other activities that keep his joints flexible. Even though he is slow and awkward, encourage him to take part. Feeling sorry for him and just letting him sit is the worst thing you can do.

Walking uphill and hillside farm work help prevent tiptoe contractures of the ankles.

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Braces. Long-leg braces should not be used until absolutely necessary, as they will let the child’s legs grow weaker faster. Sometimes lightweight plastic ankle splints, worn day and night, will help delay ankle contractures and keep him walking better. (See Chapter 58.)

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If contractures of the knees and hips begin to develop, try resting or sleeping with ‘sand bags’ to press down the legs and help straighten them.

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CAUTION: Balance your efforts to provide therapy or surgery against the need of the child (and his family) to lead as full, happy, and normal a life as possible. His weakness will increase and his life will be short regardless of all efforts. The goal of all care for the child with muscular dystrophy should be to help him get the most out of living NOW. The temporary benefits of surgery should be weighed against the pain and hardships it would involve.