My son is 11 y/o and was officially given the diagnosis of Narcolepsy yesterday. I really don't know much about it and keep reading the same things over and over again on different sites. I was wondering if anyone has any advice about this? I've only been able to find adults with it so far and nothing about children..
Understand your predicament and sympathize with you.
Narcolepsy is an uncommon sleep disorder in children but can significantly impact kids who have it. Narcolepsy is diagnosed by the sleep onset REM episodes (SOREMs), wherein the person goes into the dream phase or REM cycle soon after sleep onset. This is evident in the Multiple Sleep Latency Test (MSLT). Narcolepsy is characterized by excessive day time sleepiness, sleep paralysis, cataplexy where the person has episodes of loss of muscle function while awake, hypnogogic hallucinations and automatic behavior. It can however be regulated with medications. So, ensure that he has them regularly and follow up with your doctor.
Thank you both for the responses. My son has turned 12 since and has entered Middle School this week. I am absolutely terrified about him having an episode in front of these kids. The Neurologist has him on Concerta which seems to be helping right now. It also get him a little edgy sometimes.
Does he have narcolepsy with cataplexy? Or is it without cataplexy?
Xyrem is a drug approved for treating narcolepsy with cataplexy, and it's taken at night in two separate doses. It combats one of the most important symptom of narcolepsy, aside from cataplexy: fragmented night-time sleep.
Just to give a bit more background in case I'm catching you off-base..... Narcoleptics have a loss of hypocretin in the brain during the day, believed to be caused by their own immune system--and since hypocretin is an important molecule in regulating wakefulness and hunger cravings, narcoleptics struggle to stay awake during the day (and may overeat to attempt to gain "energy" to stay awake, leading to the increased incidence of obesity in narcoleptics). At night, even though they may sleep for 8 or 9 hours like an average person would, their sleep isn't restful because their brain "wakes up" very frequently throughout the night. As a result, narcoleptics wake up feeling exhausted and unrested, regardless of how much sleep they get. Xyrem helps combat this night-time component of narcolepsy, but I'm not sure if it is approved for use in children (I would google it for you but I'm on very slow internet). This would definitely be something to look into to help your son start his mornings off more rested, and to treat his cataplexy, if he has it.
Also, I would talk with the school/his teachers about allowing him to discreetly take short naps throughout the day. Hopefully, you can figure out how often this is necessary before school starts? He could probably do this in the nurse's office. It's also important the teachers understand exactly what narcolepsy is so they can accommodate your son. This will include things like giving him extra time to complete a test (especially if it's a long test, where he's more likely to lose focus and/or nod off), possible naps, and understanding a cataplexy episode, should it happen. Teachers should also know how to explain to the students what happened if they begin to ask questions, and they need to understand, themselves, how narcolepsy will impact him in the classroom. He might nod off during a lecture, but that doesn't mean he's bored or lazy.
I guess the best advice I could give you would be to let your son know it's okay to skip activities if he doesn't feel up to it, and that you've got his back (should a teacher question his behavior, or classmates become curious about his frequent sleepiness). For example, it's okay to miss a classmate's birthday party if he's too tired to attend. Let him know that he's perfectly capable of achieving whatever he wants to achieve if he works at it, but this will only happen if he prioritizes his health. Don't pressure him to take on too many activities, but don't allow him to sit around, either--have him pick something manageable that he enjoys and can excel at (Boy Scouts? a sport--if he doesn't have cataplexy? let him take language lessons or cooking classes outside of school for fun?), as narcoleptics have been proven to stay awake more readily when they're engaged in activities that they're actively interested in.
I hope this helps! Your son has a long road ahead of him and it won't be easy at times, but the advances in our understanding of the disease as well as the treatment options have been phenomenal in the past few decades. As long as he finds a medication regimen that works and makes a few lifestyle changes, he should have no problem. There's a great narcolepsy community and forum on the Narcolepsy Network site (just search for it on Google; you'll have to register a username to comment).
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