Posted on February 25, 2008 by yemmas
My 11 year old son was diagnosed about a year ago with Narcolepsy. He rarely slept through the night, and had episodes of falling asleep in inappropriate situations. One time, in the tree house of a bustling zoo, my sister in law found him asleep, sitting up in a swing. He was knocked out cold, even though there were crazy kids screaming and running a few feet from him. He has fallen asleep during dinner, homework, and slept away an entire day of school in the nurses office. He has fallen asleep at his desk in class, and while petting a cat.
After ruling out other possible causes, they did a Sleep Study, followed by a Nap Study. He was on a medication at the time for unrelated issues however, we independently decided to take him off the medication for a month to see if his fatigue and sleeping incidents improved; they did not.
The results of the studies came back as Pathologic Sleep, 1 nap was with REM, the other 4 were not. His Sensory Defensiveness, caused a meltdown, so we ended the nap study without completing all the naps. Based on all the information and results, the Dr. diagnosed him with Narcolepsy without Cataplexy. You need 2 REM naps to diagnose Narcolepsy, Kaine had 1 of the 2. The Dr. took into consideration the medication he was on and also the smaller sample of nap studies (due to ending the nap study early) when making the diagnosis. He was started on Provigil, which not only improved his wakefulness, it also improved his behaviors which retrospectively, I now realize were compounded by his severe fatigue.
Today, we met with the Pediatric Sleep Specialists at Vanderbilt Childrens Hospital. I feel very confident in the care they will provide to him. They suggested repeating the Sleep & Nap Studies to confirm or give more accurate information on the underlying conditions contributing to his sleep and fatigue problems. He is not on the medication anymore that he was on during the previous study. They explained that the medication could have affected his REM sleep by causing an episode during the 1 nap, or it could have caused him to not have REM during the other 4 naps. Either way, it is great that we can now repeat the sudies to get a very clear picture of where he is truly at, off any medications. He will need to stop the Provigil for a week, so they are going to try to schedule the sleep study for spring break so he won’t have to be at school without his Provigil.
What the Dr’s proposed is that he may indeed have Narcolepsy, but he also may have (depending on the results) IH (Idiopathic Hypersomnolence). He also may have a limb movement disorder as well. The treatment for Narcolepsy and IH are pretty much the same, both conditions obviously impact functioning on a day to day basis. It will allow us the opportunity to be clear on which sleep disorder we are treating, without doubts.
His school raised a fuss about him taking daily naps at school, refusing to accept the CA Dr’s orders. Now that we have waited several months for a TN Sleep Dr to write orders, I hate to tell them, the scheduled nap is part of the treatment protocol. They are going to try to refuse to comply with the orders, I just know it. Thank God I have 2 advocates now, to deal with the Special Eduscation issues. He has not been able to do homework because he is so sleepy after school, and his behaviors are totally impacted by his built up fatigue during the day. How can a kid eat dinner if they are asleep? Now he will be able to take his afternoon dose of Provigil at school and be able to take a nap during school to break this cycle of sleepiness. It will be nice to see him more alert after school when he needs to attend to homework and just being a kid!
Filed under: Medication, Narcolepsy, Special Education, Special Needs, health, kids | Tagged: children, Idiopathic Hypersomnolence, IEP, kids, MLST, Narcolepsy, Provigil, REM Sleep, Sleep Disorders, Sleep Study, Special Education, Special Needs, TN, Vanderbilt
Ihave battled the idiopathic hypersomnolence, chronic fatigue, periodic limb disorder, fibromyalgia stuff since 2001. I have been unable to work during two different times, each for several months. My last dosages to stay aeake to be able to work was 80mg adderall and 800mg provigil. I became so desperate to seek alternative treatment. I urge you to look into bio-cranial therapy in your area. My dr has a website at http://www.drstuart.net. I went last thursday and I think I will get my life back now. Feel free to contact me.
Thank you. I have heard about Cranial Sacral therapy being used for many issues. I don’t think I would seek it out for my son though I hope it works for you. Sounds like you have a lot going on! Hope you feel better soon.
We have a 5 year old daughter in U.K with I.H diagnosis. She has had MSLT but did not go into rem sleep. Like you she will have another MSLT in a year.She has been offered Ritalin, we are not sure about it.
She also has differences at the school, the sleeps are an issue.
Understand where you are coming from completely!
Sounds like your son has a full-blown case of excessive daytime sleepiness (EDS). I can certainly empathize with how he feels, as I too have narcolepsy, although I don’t recall having it at his age. I was diagnosed in my early 20’s, although I remember struggling with it for at least a few years prior to that. I was diagnosed with narcolepsy, but the only symptom I have is EDS. I don’t have any of the other narcolepsy symptoms, such as cataplexy, sleep paralysis, etc. In recent years, after doing some narcolepsy research/reading on my own, I’ve come to suspect that idiopathic hypersomnia would be a better diagnosis for me, based on the results of my sleep tests. I haven’t talked to my doctor about it though, primarily because, as you stated, the EDS components of narcolepsy and idiopathic hypersomnia are treated the same way. In your sons case though I can definitely understand wanting to know exactly what you’re dealing with, because he’s still rather young, and knowing exactly what he has would especially be beneficial down the road if/when the treatment options for IH differ from those for N. It’s great that Provigil helps him. That’s the medication option with the fewest side effects, by far, at least in my experience. Most of the other medication options are of the stimulant type, and they bring a lot more unpleasant side effects with them. Good luck dealing with the schools!
JJ, I take generic Ritalin for my narcolepsy. It definitely helps with the EDS, but you pay a price in side effects. Is Provigil available in the U.K.? If so, I would look into that. It’s targeted specifically for N/IH, and has far fewer side effects, at least in my experience. The downside is that it’s a lot more expensive, which is why I’m not taking it.
(apologies to the owner of this blog; I hope you don’t mind me posting a reply to one of your other comments.)
Hi JJ and Anemic. (Are you really anemic? Because I have a stubborn case of B12 and Iron anemia.) Thanks for your well wishes. Narcolepsy and IH have some unique differences from what I have researched. One article referred to IH as Non REM Narcolepsy. Also, w/Narcolepsy, patients are typically refreshed after a nap, but w/IH, people awake from a nap unrefreshed. I think the difference between them is REM or non REM sleep.
Personally, due to MS, I can relate to IH symptoms.
JJ, I have read many things that suggest MSLT results are highly variable with children. In part because children often feel anxious in a new sleep enviroment like a sleep lab, and they have difficulty tolerating all the wires and tape. My son could barely handle it. But he slept 394 minutes out of the 410 he was in bed. His sleep mean latency to sleep onset was “pathologically short” at only 4.5 minutes. Meaning he falls asleep very rapidly, even after a normal nights sleep. This, with the one nap w/REM seems to point to Narcolepsy vs IH.
Anemic, I read that IH can be more disabling because you are never relieved by naps. I think it is worth discussing with your Dr.
Keep me posted!
No, I’m not actually anemic. It’s just the moniker that I adopted for my blog and it was taken from my blog title, which was arrived it in a rather curious way and has no hidden meaning. For some reason, it never occurred to me that it could be interpreted to mean that I am anemic. Maybe I should change it. Anyway…
Yes, the REM sleep and nap factors are partly why I think I actually have IH. I entered REM sleep at the normal time during my overnight sleep study, and did not enter REM sleep at all during my MSLT. My sleep onset times during my MSLT ranged from 1 minute to immediately. I have never once felt refreshed after taking a nap, and I do not have any difficulties sleeping at night, contrary to what many narcolepsy patients experience, from what I’ve read.
I would like to definitely know which I have. However, since I know my treatment would not change, I don’t really feel like going through the trouble, time, and expense of getting my diagnosis confirmed/changed. If the treatment options ever change, I’ll probably request that my diagnosis be re-examined at that time.
Our daughters sleep mean latency was 5.6 minutes. She slept the night before for 10 hours. On her day tests she fell asleep 3 times , and we had to wake her up each time.
Our daughter also has autoimmune underactive thyroid. It came on about 18 months ago. We don’t know why. Her IH started 2 years ago. She has HH and microsleeps also. She also says that she has a feeling of being ’squashed’ when she has her hallucinations.
Because of her age she is not allowed provogil. (known as modafinal in U.K)
We find talking to other parents with the same issues helps us a lot.
JJ, this is actually my first experience talking with another parent of a child with N or IH. I feel like it is so important but have a hard time finding other families affected by these disorders. How do you connect with others in this situation? I would love to find support resources.
Anemic (haha) I can certainly understand the cost and time thing. Sometimes the label doesn’t matter, especailly if the treatment and symptoms are pretty much the same.
My son has never slept through the night, and requires Melatonin to fall asleep before midnight. I have heard it goes hand in hand w/ N.
Our daughter is also on melatonin at night, she has two doses. One when she goes to bed, then a second when she wakes with hallucinations. I agree that the treatment is the same regardless of diagnosis…its the day to day life that can be tricky with a tired child.
The is a message board on ‘talk about sleep’ site (usa), full of info. Hard to find other parents, and they are the ones who can really have first hand knowledge.
I also use Narcolepsy Network (usa), they email me any info. I need. They have good resources regarding children in school with N. I would suggest you start there, they know all your rights .
I hope other parents are along too seeing these messages.
“I hope other parents are along too seeing these messages.” -JJ
Me too, would it not be wonderful to have an ongoing dialogue about Narcolepsy, IH and children? I will see you at Narcolepsy Network my friend!