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>"Parasomnia" sounds lovely doesn’t it?

May 18, 2011

>”Parasomnia. Parasomnia. Parasomnia.”
“Parasomnia. Parasomnia. Parasomnia.”
“Parasomnia. Parasomnia. Parasomnia.”

It has euphony. It has lilt. It’s a mantra I’ll try repeating next time I’m have insomnia at 2:00 AM after one of Hope’s bouts of confused arousal due to parasomnia.

There’s nothing heavy in this post. Sure. Now we have a word, and official diagnosis, for Hope’s crazy sleep pattern. But there is nothing new. We’ve lived with it for six years already. Except the welcome news that kids usually outgrow it in their ‘tweens. (Hoping that holds true for kids with FASD.)

Because I know many of us struggle with kids who sleep poorly (very common in FASD, but not limited to it) here are some notes from Monday’s sleep consultation for Hope with Dr. John Garcia at Gillette Children’s Hospital (who also practices at St. Paul Children’s.)

My disclaimer: I was too busy with Hope to actually take written notes and I have not studied sleep disorders so I may have misunderstood him.

Within a few minutes, he was able to rule out a formal sleep study (overnight in a sleep clinic wearing electrodes etc.). Hope has no history of seizures and no other indications that nighttime seizures may be causing her restless sleep. She also doesn’t snore (which would raise the possibility of sleep apnea).

Instead, Hope has a bread-and-butter sleep disorder, parasomnia, characterized by confused arousal and night terrors. Her brain is not adept at falling deeply asleep and staying there. Instead, she spends much of her night in the netherland between sleep and consciousness. Hence she makes lots of movements (sleeps restlessly: thrashes, talks, cries out, moves around her bed) while sleeping. Sometimes she is vaguely awake (aware that we are not there, calls out for us, wants to be comforted), but can rather easily be patted back to sleep. If she awakened so far that she was her day-time self in the middle if the night, that would be insomnia. But she does not.

Hope also has night terrors, which happen when her brain gets stuck at a different place between sleep and arousal. Hers fit the classic pattern: the child cannot be awakened out of the dream, but it eventually passes and they fall back to sleep, often having no memory of the experience. In kids who have night terrors, 2-3 per month are not unusual. 2-3 per week (which Hope can have) is more unusual. But that frequency isn’t any harder on her than less frequent ones.

What can be done for parasomnia? Having parasomnia suggests Hope probably is getting as much of that “deep restful” sleep we hear is good for us. But kids do better getting by on restless sleep than adults do. He said that there are medications than can put kids solidly to sleep and keep them there, but that the payoff for the child is an improvement of perhaps 20% in the daytime behaviors. So, he said, they typically only prescribe when parents become so frazzled from their own broken sleep caused by their child’s broken sleep that it begins to affect the parents’ ability to function well during the day.

Although Hope has rarely sleepwalked (that we know of), because she has parasomnia she is at higher risk for sleep walking, which is the next behavior up the scale from night terrors. And because kids can sleep walk silently (without waking anyone else) he suggested it would be prudent to put an alarm on her bedroom door (and if she was a sleepwalker, on the doors leading outside the house, too). Because her bedroom door is right next to our room, he said an alarm could be as simple as jingle bells or two tin cans–anything that would alert us when she opened her bed room door. Door frame-mounted electronic alarms would be appropriate for doors father away.

About ten days ago, we decided to give Melatonin (a 1 mg. chewable tablet) another trial. (We had tried the liquid form when Hope was younger and couldn’t find a small enough dose that helped her fall asleep without increasing her night terrors). I almost gave up the chewable tablets after three nights because while it helped her fall asleep faster and did not trigger night terrors, her daytime behaviors the next day seemed markedly worse.

I’m glad we decided we needed a longer trial because we’re coming to appreciate the pleasant spill-over into our family life of being able to predict when she will fall asleep (meaning she now has a regular bedtime). Hope likes being able to fall asleep more easily. And because our daytime schedule was atypical at the beginning of the trial, the departure from the routine Hope thrives on may have accounted for the behaviors. So for now, we plan to continue using Melatonin to help her fall asleep. When Hope learns to swallow pills, Dr. Garcia suggested we might trial time-release Melatonin to see if it may help her sleep better throughout the night.

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