Is there sleep any sleep disorders associated with NF1 and children

My son is about to turn 4 in August and was recently diagnosed with NF1, they have been monotoring him for the condition since he has been a couple months old but just recently officially diagnosed him. Ever since he has been a baby he has been waking up mutiple times throughout the night sometimes screaming, at first the doctor told us that it looks like night terrors, and that there was really nothing they could do about it. I have honestly tried everything, He is a very heavy snorer and a very very light sleeper, due to his snoring I took him to a ENT doctor who did say that his tonsils where very large and this could be leading to sleep apnea, which in turn could be the reason he is waking up every night, He recently has his tonsils shaved down and his adnoids removed, hoping this would cure his excessive waking up through out the night, but after he receovered from the surgery he is right back to waking up every 2-3 hours crying. I started to wonder if maybe his NF1 could be attributing to his sleeping disorder. He has a MRI scheduled on the 19th of this month for his NF but every night we are up with him when he wakes up crying. If anyone has any advise or information or maybe knows if there is a link with sleep disorder and NF1 I would greatly appreciate it,

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I as it is very bad to sleep at night.... how many I to remember myself I it is very bad to fill up. And my many acquaintances whom as well as I have NF is bad to sleep at night. To me doctors to give homeopathic remedies, but they not to help

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NF patients do seem to have a lot of sleep issues, though that certainly isn't the case for everyone. Interestingly, neurofibromin (the missing protein in NF) does have a role in regulating the circadian clock. Anyway, here are two links for on circadian clock and NF and one on "Psychological Disturbances and Sleep Disorders in Children with NF 1".

Unfortunately, NF patients also have a tendency toward pain which would affect sleep. Your upcoming MRI should help rule out whether there are any tumors that might be causing pain or sleep issues. Pseudarthrosis, bowing of the long bones is a source of pain for some NF kiddos. However, this is often diagnosed at a younger age, is frequently visible, and you would likely see symptoms during the day. Now that all said, most NF patients that have sleep issues just have sleep issues with no known cause.

Hope you get some reassurances soon.


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I obviously do not remeber being an infant. But from about first grade on I remeber having trouble falling asleep and then waking up multiple times and being exhausted in the morning. My parents were not harsh disiplinrians but were strict and ridgid about sleep so I would fake being alseep,

I always thought my sleep issues were psychological because i would lay in bed rehashing the day from grammar school learning issues to college anixety. I was not diagnosed with NF (despite being born with multiple cals and freckles) until my 50s.
On the long list of possible effects of the NF no doc has eveer added the insomonia or even asked me about my sleep.

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Thank you very much for your replies!!! I actually stumbled upon this website last night while I was of course trying to put my son back to sleep after on of his episodes, and I am so glad I did. I have so many questions and concerns about my son, it's nice to be able to learn about what my son has been diagnosed with because it just feels as if the doctors just havent't given me any thing at all!!! Reading through the post last night I think I am deffinetly going to look into taking him to a NF clinic. My son is my life and it just breaks my heart, when he points at his cafe au lait spots and ask me what they are I just keep telling him that they are his beauty marks. And know I recently just added two more angels to my life when me and my girlfriend just had twins one boy and one girl, and it just keeps me up at night thinking that they might also be diagnosed with NF1 I spoke to there doctor about my sons NF and he told me that I should be tested to see if I was a carrier so they will know if they should be monitored for it or not, that is posiibly they worst feeling in the world knowing that you might have passed this gene to your children. they are not showing any spots but they where born premature, and my sons cafe au lait spots didnt start to appear until he was a couple months old. Anyway sorry I got a little of track there, but just wanted to thank everybody agian, and thank you Cindy those links you posted were very informative, and it sounds like my sons NF could be the reason for his sleeping disorder, thanks agian

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Nothing is so draining and difficult on a mother as a child with poor sleep habits. It looked like, from the studies Cindy posted, that sleep disorders were not more common in NF children than the normal kids. In fact, the one study tried to fix sleeping habits by introducing the NF infected fruit flies and was partially successful. Sleep disorders are more correlated to learning disorders and epilepsy--which can occur with NF. I know an autistic child whose mother just figured out that he is having siezures through the day and night that could easily be missed if you don't know what to look for. So ask your doc to rule out abnormal brain activity (seizures).

Another possibility is anxiety. Does your son exhibit an anxious symptoms in other situations? Difficulty at separation from you? Afraid in new situations? If anxiety is causing his sleep disturbances than interventions to make him feel secure (sleeping with parents/sibling, stuffed toy to cuddle, favorite blanket, herbal remedies to reduce anxiety, meds).

I hope you figure out his difficulties soon. I have had eight children and they all would awake in the middle of the night and come in to cuddle in the big bed up until the early school years. Sometimes my husband and I would wake up with three children beside us and one laying across our feet. Young kids just need lots of security day and night.

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Not that I have any great answers (wish I did), but I have a nine year old with PANDAS (a neurologic disorder associated with strep) and when it's aggravated she has HORRIBLE sleep issues. I took her to an herbalist/naturopathic doc who helped me find a tincture called Relaxing Sleep Tonic. It helps SO much. Now I would only recommend doing something like that with a professional's guidance, but I do think there are things out there like this that can really be of help. I have an infant with NF1 and major sleep issues as well. We won't be using herbs or anything stronger than homeopathics for him until he's older. But I feel your pain.

Cindy, I think it's interesting that you mentioned there could be pain associated with the tibial bowing. My son has tibial dysplasia and It hadn't occured to me that it could be causing him pain at night. Makes sense. It hasn't broken, but he does favor that leg throughout the day.

My best to you all....

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Congrats on the birth of your twins! Isn't it just like winning the lottery?! I feel like I'm as old as dirt when I say that I have a 16 year old daughter and soon to be 14 year old boy/girl twins (one of my twins has been suspected of NF for a number of years). A million people will tell you how fast they grow up, and we think we understand what that means until one day you realize their baby years are behind them. Do NOT let NF rob you of a single moment of enjoying their childhood. It isn't always as easy as it sounds, but it is honestly the best advice I can give you.

An NF diagnosis is hard to hear, and when you feel a rug has been pulled out from underneath your feet, its quite understandable that you might begin to imagine that your other children are at risk as well. The truth is that there are no "carriers" in NF. If you have absolutely no signs of the disorder (and I'm including the diagnostic criteria below) then there is every likelihood that your son has NF through a spontaneous mutation, meaning it just happened. About 50% of NF cases occur this way, the other 50% are inherited.

There is a rare event called gonadal mosaicism where more than one child is affected even though the parent has no overt signs of the disorder. This is where NF is present in the reproductive cells only. (For anyone wondering, this is different from what we are describing on the "How did I get NF" thread). However, gonadal mosaicism is believed to be EXCEEDINGLY the point where I would say that I doubt you need to be concerned about it.

If you have signs suggestive of NF then I would recommend that you mention it to a Geneticist, or doctor familiar with NF. Another thing you can do is to see an Ophthamologist to see if you have lisch nodules (though if you have no CALS or freckles or bumps) my personal opinion is that it is unlikely you'll have lisch nodules, however, it is another avenue to have checked out for the sake of being very thorough. If you or your girlfriend have no signs of the disorder then I am sure the NF specialists can give you appropriate reassurances. They will also discuss with you whether it is worth doing the Genetic testing in your case or not. They may, or may not, agree to test you or the other children.

I will admit that my U.S. Geography isn't perfect but if your insurance would cover you to go to Maryland, there are definitely some worthwhile resources there and I think that is probably the closest to you.

Here is the diagnostic criteria, in case you haven't seen it.

NIH Diagnostic Criteria for Neurofibromatosis

Diagnosis of Neurofibromatosis Type 1 (NF1)

Six or more café au lait macules over 5 mm in greatest diameter in prepubertal individuals and over 15 mm in greatest diameter in postpubertal individuals
Two or more neurofibromas of any type or one plexiform neurofibroma
Freckling in the axillary or inguinal regions (Crowe´s sign)
Optic glioma
Two or more Lisch nodules (iris harmartomas)
A distinctive osseous lesion such as sphenoid dysplasia or thinning of long bone cortex with or without pseudoarthrosis
A first-degree relative (parent, sibling, or offspring) with NF1 by the above criteria
The criteria are met in an individual if two or more of the features listed are present.


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My son started having difficulty with sleeping at around age 7 or 8. I always complained at the NF Clinic each year about this and it was dismissed or not taken seriously. They told me to try homeopathic remedies such as Melatonin and no tv or video games two hours before bed, blah blah blah! Nothing worked and then all of a sudden when he was 17 and I scheduled him for his annual clinic appointment, low and behold they send me a questionnaire in the mail about sleep to fill out prior to his appointment. I was so upset that they finally decided there may be some correlation between sleeping disorders and NF after my son has suffered for 10 years with this and no help whatsoever. Needless to say that we have since transferred his care to another hospital that actually listens when you say you have a problem and tries really hard to help you fix it. He only takes Xanax for sleep since he has OCD about side effects and decided that he would rather not sleep than have some of the side effects these drugs can have on you. He sleeps at random times during the day and is never awake or asleep at the same time of day. Now that he has graduated high school and is still recovering from surgery his sleeping patterns are totally messed up. I have no idea how to help him get back to some form of normal sleeping and the mere suggestion that he tries to do it on his own causes a huge rift in our house. He resists everything his father and I suggest to help him with sleeping. I guess he will just have to figure it out on his own, he is a block head!!
Thank you CindLouWho for those informational links, I read most of both of them and found them to be very enlightening! I hope someday someone will figure out how to help these kids with NF get some sleep!

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is he still snoring? why did they shave his tonsils and not remove? Does he itch when he wakes up.? is he acting out of the norm? I have nf1 just diagnosed 3 years ago. but I am 40.. and i do not sleep well at all...

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Ike is a very light sleeper. He refluxes a bit still so we have a body pillow running the width of his bed and then a regular bed pillow on top. It keeps him on an incline which helps stay asleep. We also have a fan running for white noise to cancel out noisy cars on the road outside, and room darkening curtains. Between the white noise and the room darkening curtains, we have got him to sleep thru thunderstorms and the 6/7am morning "rush" of vehicles on the road. He still wakes on occasion, but its much less than he did. We are going on vacation for the first time since he was born and I gotta say I am little worried. I am hoping disney is exhausting enough he will sleep ok.

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I have sleeping problem also and it very hard to go to sleep when u are in tonss of pain i been in pain seen i was born and i am 22 now and it has'nt gotten any easier at all because it like some one is stabbing something in you body he might not be able to explain it to him .He might need to try some sleeping lotion that will relax you ,He might not want him on medication at his age but if he is in a lot of pain he need to be on medication such as lortab,oxycontin ,oxycodone which this two are the same but u read up on will see he might need be on a muscle relaxer .Hope this help you out just try let him be kids much as he can because pain does might life hard.

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