Angelman Syndrome and Sleep Disorders

Angelman syndrome children and adults have serious sleeping disorders.

by Sybille Kraft Bellamy

Apart from seizure problems, it is one of the most difficult aspects 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 every day 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) 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 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 foot or hand massage with coconut oil and essential oils.

Max sleeps in a homemade enclosed bed. He loves the cocooning feeling. It feels safe to him and it is his own private area. He kicks us out of his bed as soon he is in it!

Keep the room temperature low at 64 degrees 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.

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 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 exposed to germs.

Nutrition is a key factor in your child’s quality of sleep. The other reason for enlarged 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, choose goat product or unsweetened non-dairy products over cow products.  Most of the processed foods contain preservatives and coloring, avoid all of them too.

The LGIT (Low Glycemic Index Treatment) diet will help a lot for angels who wake up at night. The complex carbohydrates with the perfect ratio of fat and protein help temper blood sugar fluctuation and with the frequent small meals, it can help reduce GERD.

Children can wake up at night when they have hypoglycemia. It is a natural brain alert to wake up if the blood sugar level is too low. When this happens try to feed your angel with a nutritious meal. A mix of coconut cream with peanut butter or seeds, an avocado or a drink with warm coconut milk and coconut oil with a tsp of coconut flour.  It happens with Max from time to time. It can be the result of a growth spur, a very busy day or a change in temperature.

A good night sleep is essential for the brain.

Many studies are calling sleep the detoxifier of the brain. We all know the effect of a bad or poor night of sleep.  Our children are prone to seizures and the lack of sleep lowers their immune system making them more fragile in case of infection.

I hope these little tips can help you to regulate your angels’ sleep.  We do also have a plan B and C: Use a DVR in the bedroom with a timer and keep your earplugs within reach.