Sleep disorders in child

Hi everyone! I’m here trying to learn more to help my 9 year old boy. Recent sleep study showed mild apnea (4 in 6 hours of sleep) and hypopnea (14). Sleep doctor notes that the degree of hypoxia was surprising given mild apnea. The thing that really stands out to me is that he had 464 spontaneous arousals in 370 minutes of sleep time.
ENT was consulted and says son’s tonsils are not large enough to be causing this. Son has lots of atopic issues including asthma and multiple allergies. Sinus disease detected on MRI. Also has history of post viral encephalitis. Not sure where to turn next. Doctor is recommending redoing the sleep study and then referring to out of state clinic. Or considering CPAP. Anyone experience anything similar to this or have thoughts? My son really did not like doing the sleep study and I hate to redo it unless there is reason to believ something would be different. It’s been 2 months since we did it and have not added any treatment since then.

Hi. Is your doctor a neurologist (pediatric or otherwise) or pulmonologist? I ask because I think it's important to sort out his diagnoses... have you been told any specifics about the encephalitis in terms of how it might or might not be affecting him in some respect? Becaust without being able to keep that in mind, I'm not sure it's a good idea to head straight to respiratory issues unless it's been proven that he has e.g. central apnea (as a result of the enceph.) or obstructive or ? .. just a 'for instance', but I hope you get what I mean. His allergies could also be a factor, but unless his tonsils are really huge, I would not let an ENT encourage surgery now as it's been done in the past on others who've still (in time) needed Cpap. I don't know if 'just' redoing the study will help or not unless they now are looking at specific or different issues than previously. And what happened to his oxygen saturations in the previous study?

In other words, do you have more detailed info on what you mentoned, and/or which doctor is overseeing things for him now? I would not be looking for others here (or elsewhare) who've had similar issues - for one thing your son's 9, and most of us a whole lot older, tho' there are some children whose families write in re this or that, plus your son has many issues and they all may or may not be contributing to his problems... and the history being so complex one should not try to compare strangers' internet stories to his even if it makes you feel less 'alone'.

Please continue in this thread if possible, so we can follow what's what.. thanks!

Most of the stats about sleep disorders are based on studies of adult patients. Even pediatricians have to work with those data.

BTW, the same problem exists for very elderly patients. Most studies are on adults ages 30 to 65.

Just how low did the hypoxia go?

SherriC wrote: ↑

Tue Feb 20, 2018 7:20 pm

ENT was consulted and says son’s tonsils are not large enough to be causing this.

So they aren't recommending surgery which is usually the first thing recommended for pediatric sleep apnea because so often it will take care of the issue.

SherriC wrote: ↑

Tue Feb 20, 2018 7:20 pm

the thing that really stands out to me is that he had 464 spontaneous arousals in 370 minutes of sleep time.

That would trouble me also. Crappy sleep for sure with that many arousals even without the mild apnea or hypoxia.

SherriC wrote: ↑

Tue Feb 20, 2018 7:20 pm

Doctor is recommending redoing the sleep study and then referring to out of state clinic

If the hypoxia is really bad...I might want to at least try cpap use at the time of a repeat sleep study just to see if it helps or not but I would proceed with a referral to someone who is highly specialized in the treating of unusual pediatric sleep issues.

SherriC wrote: ↑

Tue Feb 20, 2018 7:20 pm

Doctor is recommending redoing the sleep study and then referring to out of state clinic.

I would want to have the sleep study redone. They should plan on a split-night study - the first part of the night is diagnostic, and the second part is using CPAP to see if it helps.

I would want to use an AASM accredited sleep center. You can find one with this locator - http://www.sleepeducation.org/find-a-facility

I don't know how he would accept CPAP. What I like about CPAP is that the better CPAP machines can actually record respiratory events, so you can tell how he's sleeping.

Also, unlike surgery, it can simply be discontinued.

My son really did not like doing the sleep study

he had 464 spontaneous arousals in 370 minutes of sleep time

Could the stress of the situation have something to do with spontaneous arousals?

Or considering CPAP

Seems like explaining to your son (age 9) to try a ACPAP is one of the easiest, less invasive ways to alleviate some questions you have. Or a home sleep study.

So, what symptoms prompted a sleep study? What do you notice about your son's sleeping habits? After 2-3 hours of falling asleep, go and watch him for an hour. (Or use a recording baby/security cam. Compare these night to days that were rough on him vs days that were care free.

freetimecreations wrote: ↑

Wed Feb 21, 2018 1:12 pm

Or a home sleep study.

He's already had a lab study, and the doctor was left puzzled by the results. A home study is going to deliver even less information. Home study = bad suggestion.

Thanks, everyone, for your thoughts and suggestions. I spoke with the pediatrician (via nurse) yesterday and they are considering either redoing the study locally, possibly with CPAP, or referring us to an out of state clinic with pediatric sleep specialists. I prefer the latter because if I am going to put my 9 year old on a CPAP indefinitely, I want to feel confident that's the best course.

To clarify, ENT is not pushing surgery; he is advising against it. We are waiting for an appointment with a specialty clinic for the encephalitis as well. We were not told anything about it affects anything. Hopefully they will get us in soon and can help with the neuro side of the picture. We were sent to get the sleep study because of increasing mental health and behavior issues and my questioning how his medical history might be contributing. He frequently falls asleep on the bus to his after care program which was a red flag to the doctor that something isn't quite right. He also often falls asleep before 7pm if he is laying on the couch relaxing.

More about the study results:
*Lowest O2 saturation was 83.3%, with level below 88% for 9.6 minutes
*Longest hypopneic episode was 14.5 seconds
*Apneas (4) and Hypopneas (14) were almost exclusively obstructive in nature (only 1 H was coded as central)
*Arousals were already sorted out by spontaneous vs occuring with apnea/hypopnea, limb movement, and snores. 413 were coded as simply spontaneous.

I don't think that the stress of the study setup bothered him once he got to sleep. He woke up at least 3 times in the night enough to sit up and take a drink and was able to roll over and go right back to sleep.

I really don't think he would tolerate the CPAP. I could be wrong of course.

For now, I have scheduled a consult with the local sleep doc and plan to ask him if there are any patterns surrounding these spontaneous arousals and if he has any indication whether the issue is respiratory or otherwise. From there, I anticipate that we will be referred out of state. I'm looking at Colorado Children's which has not only respiratory docs in their sleep clinic but also neuro and cardio. Further input welcomed!

Two things (among others) is that his obstructives were low vs hypopneas and that sometimes can indicate that he's more of a back than a side sleeper, and that provokes more apneas. If that's the case, it might be worth trying to get him to not sleep on his back (or flip to it overnight) by e.g. having him wear a towel-stuffed backpack for a few nights to see how it goes (you won't know the ratio of events, but he might feel more rested). And, if it does turn out that he needs Cpap, I encourage you not to let him feel you think it's a bad idea as he'll pickup on it (as kids do) as a reason to not try and make it work. I'm sorry I should have written less quickly re being careful about ENT's being scalpel-happy as you're right, he did discourage that... just in the habit of advising others whose MDs are not so careful!

SherriC wrote: ↑

Thu Feb 22, 2018 9:36 am

... I spoke with the pediatrician (via nurse) yesterday and they are considering either redoing the study locally, possibly with CPAP, or referring us to an out of state clinic with pediatric sleep specialists. I prefer the latter because if I am going to put my 9 year old on a CPAP indefinitely, I want to feel confident that's the best course.

... We are waiting for an appointment with a specialty clinic for the encephalitis as well.

... For now, I have scheduled a consult with the local sleep doc and plan to ask him if there are any patterns surrounding these spontaneous arousals and if he has any indication whether the issue is respiratory or otherwise. From there, I anticipate that we will be referred out of state. I'm looking at Colorado Children's which has not only respiratory docs in their sleep clinic but also neuro and cardio. Further input welcomed!

You've got an excellent plan. Maybe you want to update this thread as you get some more results.

I am pretty new to all of this, I'm not an expert but perhaps the some of things I have learned thru my son's experiences can be of some help. My son is older than your son, he was 15 when he had his first sleep study. My son has mild to moderate sleep apnea and like your son his sleep study showed that he was hypoxic. My son's baseline oxygen saturation was low so his doctor wasn't sure if CPAP would completely resolve the hypoxia, but it was a good place to start.
My son's doctor decided to start him on CPAP without doing a titration sleep study. My son's CPAP machine records data on his breathing patterns and respiratory events, so his doctor had the DME set the machine to automatically send the data to her office and she adjusts the machines pressure as needed remotely. My son has done great with CPAP and I feel a huge part of his success was his doctors decision to introduce CPAP at home first. A secondary reason his doctor chose to introduce CPAP in this way was because she felt that in order to determine whether or not his sleep apnea is the singular cause of his hypoxia his sleep apnea should be considered treated before the next sleep study. We're still waiting on the next sleep study so do I don't know if CPAP has fully resolved the hypoxia, but I can say that the CPAP has dramatically improved my son's quality of life. He is sleeping better than he ever has, he no longer falls asleep during school, and his cognitive abilities have dramatically improved. I encourage you to give CPAP a try. If it doesn't help your son you can simply send the machine back to the DME, you are not committing your son to a lifetime of CPAP by simply trying it out. Since your unsure about if and when you want to do another sleep study, perhaps if your doctor is willing you might consider trying to introduce in a simular fashion to the way my son's doctor did it.

A few more thoughts:
-When deciding if and where to do another sleep study be sure to consider elevation. My son has had 2 sleep study's one at near sea level and a 2nd locally (7000 ft). At sea level my son's hypoxia did not show up and his AHI was considerably lower than it is at the altitude we live at.
-If neurological problems are a concern be sure to ask neurology if your son should have additional EEG monitoring during the sleep study. During a sleep study generally the EEG is primarily used to monitor sleep stages. If there is any concern about the possibility of seizures additional EEG leads can be used to get a fuller picture of brain activity.

My son's sleep doctor/ pulmonolgist is from Children's Colorado, and she is awesome! Not sure if she is accepting new patients, but if you do decide to go to Children's Colo PM me and I'll give you her name.
Good Luck!

colomom wrote: ↑

Thu Feb 22, 2018 12:44 pm

We're still waiting on the next sleep study so do I don't know if CPAP has fully resolved the hypoxia

Why don't you ask your doctor to order a home overnight pulse-ox study? Many DMEs provide the equipment and a report back to the doctor at no cost.

It's better to have the study run two or three nights if the DME is willing.

colomom wrote: ↑

Thu Feb 22, 2018 12:44 pm

My son's sleep doctor/ pulmonolgist is from Children's Colorado, and she is awesome! Not sure if she is accepting new patients, but if you do decide to go to Children's Colo PM me and I'll give you her name.
Good Luck!

Thanks so much for your input. This are helpful things to think about. I will definitely reach out if we wend up heading to CO Children's. Appreciate it!

-If neurological problems are a concern be sure to ask neurology if your son should have additional EEG monitoring during the sleep study. During a sleep study generally the EEG is primarily used to monitor sleep stages. If there is any concern about the possibility of seizures additional EEG leads can be used to get a fuller picture of brain activity.

THIS! Because your son has a history of encephalopathy, this is extremely important that seizures be ruled out.