By far, one of the things parents, carers and the wider family struggle with the most is the issue of sleep, or lack of it. Unfortunately, most (although not all) individuals with AS just need less sleep than their typical peers and there isn’t one single quick fix to this.
Health issues associated with Angelman Syndrome may lead to poor sleep. Certain seizures (eg myoclonic seizures) may occur in light sleep or on waking. These are similar to the sensation of falling and jerking awake that many people experience. Pain caused by constipation or feeding issues may also cause sleep disruptions. Ear infections are also common in individuals with Angelman Syndrome.
Maintaining regular bedtime routines can be beneficial for some families. Keeping lights in the evening/at night to a minimum; having some calm quiet time before bed; having a dark cool bedroom; removing sources of light/noise may all be helpful. During the night, when the person with AS wakes up, try to keep interaction to a minimum – carry out the care necessary without engaging in conversation, try to keep lights off or very low if possible.
Bath salts and lotions – a warm bath in the evening can help to relax and soothe. Some people find that addition of Epsom salts to a bath can help improve sleep. Some people find that applying soothing ‘night time’ cream can also help.
Taking turns – share the night time care as much as possible. You could take alternate nights to be the one “on duty”, or swap half way through the night.
Individuals with AS, particularly younger children, struggle to control their bodies. Close fitting sheets tightly tucked in, or weighted blankets which provide the individual with a sensory feedback my help with this. Enclosed beds also work for some families. A more expensive option is a fully enclosed bed or specially built room within a bedroom (eg SafeSpace). Gro-bag sleeping bags now come in all sizes up to adult. Ask your OT for advice on weighted blankets or more specialist beds.
Melatonin can be provided by your GP on prescription. Melatonin is a hormone and the amount that each person makes naturally is different. This makes it very hard for anyone to determine the correct dose for a particular individual. Hormones work by a feedback loop mechanism, which means that if you suddenly introduce too much of that hormone into the body, the body will recognise that it has too much and try to regulate the levels, causing worse sleep problems that you had initially. The effective dose for your child may therefore be a lot less than what is prescribed and may take a few days to get right. It works more effectively if it is given in conditions of low light (eg dusk, or a darkened room) in a non-stimulating environment between 15 minutes and two hours before bedtime (again, this varies widely between individuals). Discuss dosing and timing strategies with your GP, but on the whole, most people find a very small dose is effective. It may come as tablets or liquid form.
Melatonin may not work for every person with AS and it will not keep the person asleep, so you may find they still wakes during the night, but probably less often and for shorter periods of time.