Angelman Today January / February edition 2014 | Page 38

Angelman Syndrome and Sleeping Disorder
By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders. Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with.
Some angels sleep only a couple
of hours a night, some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning.
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers.
The majority of angels,
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern. In order
to increase the chance
for our angels to fall
asleep at a normal time,
it is very important to
keep them physically active and
intellectually stimulated during
the day.
For Max , del+ 12 years old, we
have a very strict schedule.
During the week we wake him
up everyday at the same time.
After that, he has breakfast and
takes the bus to school. His
schedule at school is very full.
They rotate all the typical
therapies (OT, PT, speech
therapy) all day and he is
physically engaged, either
standing or walking throughout
the day.

When he gets home from school

He has a meal, playtime or
therapy, and an early dinner.
After that, he takes an Epsom
salt bath with dead-sea salt. just
before going to bed he has
another meal.

“Go to sleep little baby”
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions. It is very important to
be calm and quiet when we put

Keep the room temperature low at
64 degree F. If your child pushes
away blankets, use a fleece pajama
on top of a cotton one. You can
also have them wear cotton socks.
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room.
Follow your usual routine with
melatonin or other sleeping aid.
Max does not take anything. Keep
a cup of water or herbal tea
available for your angel.
A lot of children have
snoring problems at
night. The low room
temperature and a
humidifier will help the
situation.

our children to bed. As soon as I
put him to bed, I turn off the light
immediately and tell him it is
time to go to sleep. I also use an
essential oil diffuser, a white
sound machine and a night wave
assistant. Keep brothers, sisters
and pets away during this
specific time in order to avoid
any stimulation. You can do a
feet or hand massage with
coconut oil and essential oil.
Max sleeps in a homemade
enclosed bed. He loves the
cocooning feeling. It feels safe to
him and it is his private area. He
kicks us out of his bed as soon he
is in it!

It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore. Those glands are
part of the lymphatic
system. Both help
protect a person from infection by
trapping germs entering in the
mouth and nose. Our angels are
very curious and explore a lot ,
they put their fingers in their mouth
and drool which leaves them
expose to germs.
Nutrition is a key factor in your
child’s quality of sleep. The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food. This very common
intolerance concerns sugar, milk
and gluten.
Choose kefir or plain organic
yogurt, in which lactose and
proteins are already broken down
by beneficial bacteria. If you can,