Team No Sleep
One of Maddie’s greatest issues is sleeping. Children with Angelman Syndrome are notorious for being poor sleepers. Typically they require less sleep than their neurotypical counterparts. I remember our geneticist telling us that as Maddie gets older, we will hear her up and about at all hours of the night. His suggestion was to make her room as safe as possible, so as we sleep, she can play without disturbing the household.
There have been limited studies linked to Angelman Syndrome and sleep. There is no definitive answer as to why, however it has been shown that children with AS produce less natural melatonin. This decreased melatonin production makes sleep hygiene an important part of Maddie’s daily routine.
Before Maddie was diagnosed, Nicole and I created a system. As Maddie goes to sleep, I am “on call” until 1 am. Then from 1 am to 5 am, it’s Nicole’s turn. As soon as the clock hits 5 am, it’s my turn again. As you can tell, sleep is a rare commodity in our house.
After Maddie’s diagnosis, it started to make more sense as to why Maddie’s sleep is so poor. We decided to be proactive about this instead of just throwing our hands up. Since Nicole works 12 hour shifts, we have centered Maddie’s sleep routine around Nicole’s schedule. This way as Nicole gets home from work, she can still see Maddie and it doesn’t disrupt the sleep routine.
We start bedtime at 8 pm. Maddie gets her Miralax and a bottle of Pediasure. We turn on the sleep machine which produces white noise in Maddie’s bedroom. Now this is a tricky dance. If Maddie falls asleep before we lay her down, she’s sure to be up within an hour. If Maddie makes it through her bottle without falling asleep, we have a shot at a peaceful night.
It seems that Madelyn’s sleep schedule can be predictable in its unpredictability. Her sleep pattern changes from week to week. Since Maddie is not a neurotypical child, we can now sleep train with over the counter melatonin. When her sleep gets too out of control, we start a regiment of melatonin for a week. This seems to train her back into a normal sleep pattern.
We are very selective with melatonin. We noticed that Maddie’s sleep pattern changed after coming home from a long weekend at granny’s house. With the change in environment and long car rides, she sleeps terribly when coming back home. Maddie is currently on a melatonin regiment this week. We noticed she was extremely sleepy in the mornings. This signaled to us that she was not sleeping as well at night.
Now melatonin does not guarantee sound sleep. For example, last night Maddie got melatonin at 8 pm. She fell asleep for an hour, and then didn’t go back to sleep until 2:30 am. Since this is a Maddie and daddy weekend, dad took the whole shift. Like the bad sleeper she is, she was back up at 8:30 am.
As you can imagine the lack of sleep can take a toll on Nicole and I. Thankfully we’ve developed a schedule that works for the both of us. At times one person has to pick up the heavy load for the other. This is what parenting is all about right? We will continue to work on Maddie’s sleep patterns until we find something that works. Until we find the right routine, we will be on team no sleep.
-Written by Adam Birchmeier
