As the booklet states, this page is most useful for
parents who have a child with Recessive Dystrophic Epidermolysis
Bullosa.
The importance of
movement
Most people move their joints fully every day and
don't hold them stiffly unless they are hurt-in EB there is often
blistering (with scarring) of the skin near and around the joints which
can stop them from moving fully. This, in turn, makes the joints stiff.
This is why movement of the joints is vital to help prevent movement
from becoming permanently lost.
We are all guilty of trying to prevent our loved
ones from being hurt. It is particularly difficult for parents of EB
children not to wrap them up in cotton wool and stop them from being
adventurous. But mobility is absolutely necessary for these children.
They need to keep their joints mobile to prepare them for all of life's
activities.
Babies
Babies should be put on their stomach to play (PLAY
ONLY NOT SLEEP!!!). This is a good position to learn movement, and it
helps prevent tightness developing at the hips and knees.
Contractures
Because of scar tissue at the joints, muscles and
other soft tissues shorten around the joint which in time can
permanently lose some of its movement. If this continues, they can
worsen and may make certain activities difficult or even
impossible.
If you notice your child being unable to fully move
any of his joints, it is a good idea to encourage him to move to its
limit and then repeat asking him to go as far as possible each time.
When done early, he can get back to normal, avoiding further stiffness.
Walking
It is important for your child to walk a short
distance each day (if old enough) usually regardless of blisters on the
feet. When they are very sore, encourage the use of tricycles or other
activity toy to move independently.
Swimming
This is a lovely form of exercise. By encouraging
your child to participate early he will be allowed to compete on equal
terms with his peers. Make sure to go armed with plenty of moisturizers
for afterwards.
When to
exercise
As soon as little stiffness is noticed it is a good
idea to begin. Exercises are best done several times a day if there is
stiffness, if not, allowing the child to be generally active is good.
Which exercises are
most important
-
All children with EB should be encouraged to lie on their stomach
daily.
-
Mouth exercises are of benefit to people
with RDEB as most have some tightness. They should be done each day
with the care of teeth.
-
Hand exercises should start
immediately.
Exercises
Hips
Hips often stiffen, particularly if a child sits
for much of his time. Prone lying each day helps stretch them
out.
Lie on front. Lift right leg straight behind.
Repeat with left leg.
OR
This same exercise can be done standing holding on
to something for support-such as a chair.
Knees
Knees too can lose flexibility and if bent for long
periods can result in an inability to straighten fully. Prone lying will
help to prevent this.
Lying on back- Tighten muscles hard and pull feet
"up" at same time count to 5 slowly.
then
Straighten one knee fully and tighten. Lift that
leg into the air, then lower. Repeat with other leg. (NEVER do both legs
together as this can lead to back problems)
OR
Straighten one leg when sitting on a chair and hold
for the count of 5. Repeat with other leg. Make sure the chair has a
back and that your child does not cheat by leaning back (holding on to
the front of the chair with his hands may stop this)
then
Bend right knee up taking the heel toward the
bottom. Repeat with left knee. This exercise can be done lying on one
side if for some reason your child cannot lie on his back.
Mouth
Most children with RDEB develop tightness of the
mouth stopping them from opening it fully. The tongue can become
immobile too. This makes dental care more difficult. It is important to
combine these exercises with daily teeth cleaning (which is so
essential).
Stick the tongue out as far as possible and move it
up and down and side to side.
then
Open the mouth as wide as possible (saying "eee").
If your child is sensible he can gently pull the corners sideways with a
finger at each side to give a gentle stretch.
then
Open the mouth as wide as possible to form an
"o"
if your child's mouth cracks, use a little
moisturizer or a lip balm before starting exercises.
Neck
If the neck stiffens, these exercises help stop
this from happening.
Turn head to right fully and then to left fully
keeping shoulders facing forwards.
then
With face looking straight ahead, take the left ear
towards the left shoulder-Repeat to right.
then
Look up to the ceiling and then down to the
floor.
Shoulders
Because clothing frequently causes blisters and
dressings are difficult to keep in place, children often avoid reaching
with their arms above their heads as it pulls or clothes rub. This can
lead to permanent tightness. These exercises are to be encouraged when
reduced movement is first noticed.
Lift arms out to side up to shoulder level and then
to ears and lower.
then
Lift arms forwards and straight above head with
elbows straight.
Elbows
Elbows too can become a little difficult to fully
straighten or palms turn up.
Bend elbows and touch shoulders, then straighten
with PALMS UP. Check that the wrists can move fully up and down.
Hands
RDEB sufferers experience particular problems with
joints of the fingers and hands. Regularly check that your child's
fingers will fully straighten. This can be done by putting them flat on
a table. If they have become a little bent or are being always held bent
start daily exercises. The webs between the fingers can begin to creep
up towards the tips in this condition, exercises cannot stop the
webbing, but dressings and hand wrappings seems to help.
With the fingers a little apart, straighten the
fingers fully. Check that they are completely straight on a flat
surface.
Feet
Blisters on the feet can discourage your child from
walking. Bandages should not be too tight over the tips of the toes so
that they can grow properly. Ensure that your child's ankles are not
stiff as a result of habitually walking on its heels or toes to avoid
blistered areas. If tightness is noted, this exercise should
help.
Pull feet up and then push
down
