Guidelines for parents on the play and development of the child with Epidermolysis Bullosa

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This is the transcript of a little booklet distributed by DEBRA UK by Joyce Stebbings
Thank you Brenda for typing this for us!

INTRODUCTION

As parents with a child who has just been diagnosed, as having Epidermolysis Bullosa it is difficult at first to look forward to the future. If that child is to develop as normal a life as possible then we have to encourage them every step of the way. Each new milestone achieved is as important to the child as it is to the parent. We need to show the child that it can be fun to learn.

BABIES AND TODDLERS

A newborn baby needs to feel safe in his surroundings. Cuddling and picking up an EB baby is not the same as with any other baby. We have to take precautions to protect him such as removing all jewelry before handling in the early years. If you want to hold him close, it is easier to have him lying on a pillow or foam wedge. In doing this he is protected from being scraped against any buttons etc. on clothing. Babies love to hear the sound of peoples' voices talking to them, especially mum's. They are not aware of what is being said to them, but the peaceful tone being used has a somewhat calming effect. It is also important to share eye contact at this time. It can make them fell more secure if they know someone is actually standing there.
Extra precautions have to be taken at this time with toys. Check for sharp edges, and that the toy will not make the baby too excitable. Vigorous movements will cause damage to exposed skin.
We must also remember the importance of stimulation. This encourages the baby to use all of its given senses. A bright colorful environment is ideal with lots of pictures and mobiles. Musical toys can be used during dressing changes for a calming, soothing effect.
Baby gyms are a good idea if the baby does not have to stretch too far to reach it.
As the child grows older it is a little easier to find suitable toys. Telephones are a great favorite and benefit them intellectually especially their language skills. Bath books are also good because they are soft and easy to carry. Another favorite is the video recorder. This can not only be used as a fun item but also as an educational back up. Because of the length of time dressing changes may take it is a good idea to use videos for distraction play. It will help keep the child amused and reasonably happy during a somewhat distressing time. Story and music cassettes are also helpful if a video recorder is not available.
A playpen is a good idea if you feel that you need a rest from continually keeping watch over your child. Pad the base with sheepskins, and put soft interesting toys within easy reach and tied on for easy retrieval by the child. This is also a time when they want to be continually on the go. Watch out for sharp edges on the furniture. Extra padding on the elbows and knees may be essential as protection. Some falls and scrapes will be inevitable during this time.
The tongues of children with Dystrophic EB are often shorter than normal and can be slightly fused, so the mouth tightens. Mirror work can encourage the child to make funny faces and achieve maximum mouth mobility. Fun games like trying to lick jam off the nose or blowing bubbles can help. Singing is very useful to as it can be done with others and requires wider mouth opening than speech. Some things, which can be made enjoyable, do not seem like such a chore to the child.

EXPERIMENTING WITH FOOD

When any child starts solids there are always initial problems in discovering what he likes, how to feed him, and the conflict of preventing him from making too much mess whilst allowing him to experiment with food. You have the added problem of not causing more blisters and keeping the bandages clean. However, it is necessary for your child to explore new textures and tastes. This might involve getting in a mess but a compromise is needed. It is possible to buy aprons with sleeves for such occasions.
Star off with soft foods such as mashed potatoes or banana, then progress into slightly harder textures. If the skin is too blistered around the mouth it may be necessary for you to feed your child for a while to prevent more damage. The types of food your child is able to eat will become clear. There might be some food he finds difficult to chew or swallow. Feeding himself is the first step towards independence. This will begin confidence building. Small thin baby spoons are better than the wide metal ones you can get for older children.
As these children often suffer from sore mouths and throats due to blistering, in addition to teething, minor illness and food fads, their food intake can become affected. Children quickly pick up parental anxiety on feeding so on bad days parents should try no to transmit such anxiety to the child and never force food. Sometimes just looking at the size of the plate is off putting to the child. Food can be made fun by making funny faces and different colored milkshakes can tempt the child, even a small mouthful is better than nothing.

SCHOOL AGE CHILDREN

Parents should be encouraged from early days to let their EB child mix with others. It is tempting to want to protect him and argue that he will be injured too easily but it is vital to aim for as normal an upbringing as possible. Friendship and conversation, fun and laughter need to counter balance physical pain and irritation.
Mental ability and knowledge will have great value in future job prospects, if physical activity has to be curtailed. The aim should be to produce well balanced, well informed, well-rounded personalities rather than one that is introspective and nervous or embittered. At the age of three or four organized play groups in the home or at a center are the next stage. The parent can initially stay with the child to settle him in - show staff how to handle him and watch for hazards, but parental involvement should be gradually withdrawn after a few sessions.
Most children go to mainstream schools but a few do better in schools that can meet their special requirements. In both types, integration must still allow for the restrictions imposed by the condition. Time must be allowed for the child with EB to achieve a result rather than leave an activity incomplete or have some - one unnecessarily helping them. It must be remembered that children with EB can become exhausted quite easily, especially if they are anemic. However, it must be assessed whether your child is genuinely tired, unable to cope, or is using the excuse of exhaustion to opt out. The aim is for as normal a life as possible.
A great many activities that nay other child can achieve can be achieved by a child with EB as well. Sometimes a minor adjustment may be required. The ability to participate may change form day to day, but it must be remembered that exclusion can cause as much damage as participation. For example, if your child has to sit out a PE session, the stiffness incurred can actually increase the need for physiotherapy or exacerbate existing contractors. Adapting the lesson so that the child with EB can participate is better than him not trying. This encourages participation and avoids feeling of being "left out". If the teacher has any concerns it might be a good idea to consult the physiotherapist.
When a child goes to mainstream school, many local authorities provide a support worker to be with him during the school day. The worker can help the child with any dressings that may need changing, be there to help during break times, and so on.
Special equipment may be required for an individual EB child. Wherever possible normal equipment should be modified. This will help the child avoid becoming segregated from other children. Items that are too narrow to hold can be enclosed in foam or melolin to make them more usable. Foam tubing is available in various colors through your local occupational therapist/physiotherapist, or if you prefer it, a wide range of pens and pencils are available which are designed for easy holding. They are triangular in shape, fairly thick, and are called hand huggers.
If surgery is planned, try and make modifications to equipment in advance so that the child doesn't miss out on activities.

TEENAGE YEARS

Some may think that this is a long way off but for most EB children this is and important time of their life. It is important that during their younger years they do get the right nutrition and are encouraged to keep mobile, doing the appropriate exercises given by the physiotherapist. At school most of the EB children will have access to computer if they find it difficult with their writing skills. If planned by the school, exams can be done with the use of computers. It is important however that they do not become dependent on them, as this would discourage them from using their hands to write with.
If at any time they feel they are the only ones with difficulties like this talk to them honestly. Be positive about the things they can do. This can sometimes be painful. If you feel that you are finding it hard to cope, don't hesitate in asking for help. Maybe it would help if they could contact with others who are facing, or who have faced, the same problems. Teenagers often find it easier to talk to their peers rather than family. This is normal so don't feel rejected.

SELF ESTEEM

Although some children may find it easy to cope others may not. You as parents can look for any change in behavior or you might overhear something the child says. This can be worked through with the help of a child psychologist, play specialist (if your child is in hospital), or teacher.
These people are in a good position to help children build self esteem by making them feel special and introducing them into joint activities with other children e.g. board games such as "all about me", where everyone expresses and talks about how they feel, to encourage them to feel good about themselves and let them know there is always someone to talk to.

DISCIPLINE

Children with EB can only grow and develop to their full potential with the constant support and guidance from their parents. This may be a daunting thought but don't wrap them in cotton wool, let them experience what the world has to offer and develop from it.
It is very difficult for the extended family and friends no to over compensate for the affected child. Under this pressure it is very hard for you not to do likewise. It is important that you have a positive attitude and expect the most for, and of your child.
All children need boundaries set and some sort of discipline for them to grow in a secure, structured framework. If discipline is not introduced early the child may think he is exempt from punishment and this could cause more problems. Children can feel insecure if they are out of control. Physical discipline is not advisable. It can however take the form of losing privileges, treats or being sent to their room for a period. If there are problems at school, discuss ways to approach discipline with the teachers.

A POSITIVE THOUGHT

The best source of information can only come from other parents with EB children who have gone through it all before you. Their constant support for each other is unquestionable, as is that of the professionals who also work with EB children.

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