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.
