DMD - A Guide for Parents
Section 3
General Care
Bones
When bones are not subjected to the normal stresses of everyday living
(such as occurs during walking, running and jumping), they lose calcium
and become soft or brittle. Soft bones fracture more easily than normal
bones. This is not often a problem until well into the wheelchair phase,
when accidents such as falling from the chair or during transfers to or
from the chair may cause a fracture. Sometimes it is not very obvious
that a fracture has occurred, until an X-ray is taken because of persisting
pain or increasing swelling.
If most of the weight of the body is put onto one buttock for long periods
while sitting in a wheelchair there may be discomfort in that area or
even sciatica (pain down
the back of the leg) if there is pressure on
the sciatic nerve.
Bowel
Management
Good diet and a regular bowel routine are essential and these habits can
be established early in a child's life. It is important that the person
with muscular dystrophy avoids becoming constipated, particularly as his
ability to move around decreases. Constipation may lead to abdominal discomfort
and pain and may also result in what appears to be diarrhoea. This paradoxically
occurs when liquid bowel material flows around the accumulated hard faecal
material.
If constipation does become a problem regular enemas or bowel washouts
may be required. If a boy attends a school for the physically disabled
it is usually possible to arrange for these treatments to be given at
school. Usually, an oral medication is also started. When the bowel is
emptied the enemas can be stopped and control maintained with the oral
medication.
Sleeping
During sleep most people toss and turn without realising that they are
doing it. When weakness is moderate to severe it is not possible for boys
with Duchenne muscular dystrophy to turn or move about much in order to
make themselves comfortable. Parents often have to help the boys move
or turn so that they can get back to sleep. This is difficult for parents
as they too need to have good sleep. Medical attendants or therapists
will be able to offer advice about various mattresses that can sometimes
help.
It has been the experience of many parents that "water beds" significantly
assist the comfort levels of children affected by MD. In many instances
the number of night turns has been reduced fro 6-8 times per night down
to 1 - 2 per night. It should be noted that "bladder" type water beds
have been found to be generally not suitable. The preferred type being
tyhe "waveless" baffled bladder, oferring the highest degree of comfort
and stability during (un) dressing.
Dietary
Advice
As weakness increases and mobility decreases, particularly when a person
is limited to a wheelchair, energy requirements are less and less food
is required. Therefore it is important to monitor food intake. The problems
caused by excessive weight gain cannot be over emphasised. Not only is
obesity bad for the health of the child, it also increases difficulties
for caregivers who are required to assist with everyday activities such
as dressing, bathing, toileting.
Dietitians are able to advise on the level of food intake required and
on the appropriate balance of the various components of the diet. Good
dietary advice plays an important role for the older person with Duchenne
muscular dystrophy but the basis for good care lies in the appropriate
attitude of parents to diet in the early stages of the disease
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