My son who is 11 yrs, was diagnosed last year with Narcolepsy w/out Cataplexy. His sleep study and MSLT showed no apnea or hypopnea but he went into REM in one nap. His sleep latency was only 4 minutes. Since that time, he has been on Provigil which has helped a lot.

Then we moved to another state and the Dr ordered a second PSG and MSLT which came back with all normal naps, a better sleep latency AND Apnea this time. Technically, there were no obstructions, 2 centrals and 11 hypopneas. His O2 sats went down to 84 %.

The ENT Doc said he is not an obstructive apnea kid, thin, normal size tonsills and adnoids. But he did say we have to treat it because of the O2 saturations being so low. What perplexes me is that when you look at his scores, his apnea is relatively mild, but his O2 sats are so low. The ENT commented on this same issue.

We question whether any of this could be caused by allergies?
Could this apnea/hypopnea have been going at the last PSG but it did not show up?
Does treatment with Provigil affect MSLT results? Thus preventing REM during MSLT?
Can he have a new onset of Apnea and also still have Narcolepsy?
Why did this apnea/hypopnea not show up on the PSG/MSLT last year?

We have decided to go with CPAP until we decide about his tonsills and adnoids being removed. The Dr did not seem so confident the surgery would help him, and I doubt they are the problem. I don't want to put him through anesthesia and discomfort with all the risks just because there is a small chance it will help. I have had a T&A, and my other son did too, but we both had seriously enlarged tonsills and adnoids which made it a no brainer...

I just don't understand any of this, the 2 PSG and MSLT studies are drastically different from eachother. I have a kid who is tired all the time, hard to wake, cannot sleep through the night and has chronic headaches. I am thrown for a loop, if anyone can offer me some info or advice, I appreciate it. I research on my own, but all my reading has not gotten me very far.

I am not a medical expert or a sleep expert and most of the knowledge I have acquired is about apnea in adults.

I think, however, that the questions you ask can be addressed by a systematic approach and that the place where I think I would begin is with your son's 2 sleep studies (including the mslts). You probably have summaries of these 2 studies. I would encourage you to request copies of the full reports for each study (which will probably run about 5 pages or so each). If you want help trying to make sense of them, feel free to post them here.

I would look for information about sleep stages and arousals and RERAs (respiratory effort-related arousals), as much as I would look at apneas and hypopneas. I would also look more closely for other information about your son's O2 levels during each study.

It does strike me that if your son was taking Provigil at the time of his 2nd MSLT, that this could have an impact on his results there, but your doctor could more reliably confirm this than I can. As your son is entering adolescence, it is seems possible to me that he could be developing a new apnea problem but this would not necessarily explain the trouble sleeping through the night or the excessive daytime sleepiness. It is known that some adults can have an apnea problem that does not show up in one sleep study but which migt show up in a second study, so it amy be that your son has this type of inconsistent apnea.

I hope these thoughts are of some help.

Best wishes to you and your son. Keep us posted on what you find out.

Bill

I don't have anything to add but I wanted to at least send hugs.  This isn't an easy thing to figure out and it's frustrating when your child isn't able to get restful sleep...one of the most basic things about life....  I hope that you're able to get some answers and find treatment for your son.  Hang in there.  Keep posting if you have more questions and we'll do our best to answer.  Hugs.

Thanks. I have 2 summary reports about 3 pages each. It really doesn't show how long his O2 was that low. Last night he woke up and then slept on our floor again, with a headache. I left a message for the Sleep Dr (Neuro) last thursday night about the ENT's recommendation for CPAP but have not heard anything back yet.

How long does it take usually to put a kid on CPAP?

He has his Therapeutic Horse Riding lesson on Thursday and it would be nice if he could enjoy it more, feeling better with some good sleep...

The Dr report did say that Provigil might have affected his 2nd MSLT. Why would they waste our time by having him do the MSLT on Provigil?

I will check out the reports for the arousals and such. Thank you for the tips and eHug. ;0)

Ammey

His Arousal's per hour are 28.4/minute. Is that high?
We heard from the Neuro/Sleep Dr today and he is setting him up with training for CPAP and the overnight to get the machine set up. Any advice on masks for a child? He has a small face.

Also, he has Sensory Processing Disorder, so I don't know how he will adjust to the mask and the noise. He is quite fond of medical technology & science so, this interest that he has may help him understand why he needs to use it.

I read about low tone, he has low tone in his upper body, poor posture, weak muscles etc. Is it something PT or OT would help? How is low tone addressed usually?

He has seen my Brother-in-aw's CPAP before, so maybe that will help him get used to the idea. I am not sure how he will react to it once it is on his face though.

I am crossing my fingers. We just want him to feel better.

Hey, my daughter also has sensory processing and low tone. Quinn has been put into physical therapy for her low tone and it has helped, however she still has dysphagia and it is believed by me and her genetic doctor that her obstructive apnea is not caused by tonsils or adenoids (they are a normal size) but by low tone in her throat. I do not know how she will tolerate a CPAP either. When we were at our genetics appointment today, the doc told me to get supplemental o2 for her and to see if she would tolerate a CPAP.

I hope that he tolerates the CPAP ok.

physical therapy will definitely help with low tone, posture, strengthening---you should look into that!  My son had very severe low tone as an infant, and it improved to moderate with therapy.  He also has severe sensory integration dysfunction and does not tolerate things on his face (like eye glasses, or oxygen canula) and now has been diagnosed w/severe central apnea    

Since your son's apnea is central I really doubt tonsil/adenoid surgery will have any affect on it.

good luck!!!!