We just did our 3rd sleep study last night.

Bryn is 18 mos old, she has Pierre Robin Syndrome...a craniofacial malformity. As we expected at birth she has Obstructive sleep apnea due to Mandibular Hypoplasia. But she also has always had mild centeral sleep apnea. Niether went below 87 de-sat.

During our sleep study the tech got nervous and called our Cardio. She them came in and told me Bryn was having Centreal Apneas to 80 de-sat.

She had a few, but the cardio said b/c me daughter is such a light/restless sleeper she wouldn't tolerate the Bi or Cpap. So we got sent home with that little bit of info and told he would get a hold of us.

I am in shock! Why is her Centeral apnea getting worse? It was never a big concern b/f. But her OSA has gotten much better.

What is the borderline for CSA de-sats? If she is at 80 de-sat what should be done?

BTW Adneiod removeal is out b/c of VPI...but they are not enlarged to begin with, nor are her tonsils.

Thank you.


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SAHM to 4 kids. Bryn 18mos, PRS with Core Hypotonia, Centeral& Obstructive Apnea, Dysphagia, Raynauds Disease, Kyphosis & Lordosis.
Mady5, Aidin 4 & Adam 10

Hi Jenna:
We did have a discussion on central apnea in children, if you haven't already seen it:

Central in Children

Basically, tho, centrals in children are largely normal or probably obstructive, just not picked up by the sensors as such.  Also, for instance, a central apnea can be generated in a child with nasal obstruction, so they're still kinda obstructive.
With those desats, obviously there're not normal, so it's far more likely that they're obstructive.

Especially when you consider that Pierre-Robin is such a breeding ground for obstructive apnea.

Do you have all the results?  If there's only a few well-spaced apneas, and maybe they occur in only in REM, that could be more clues that they're really obstructive.

At this point, I'd really lean towards thinking that way, at least the chances are more likely.  Post the results and we'll see what else we can sift through.

Your other questions-- the low desats, yeah, it's time to do something, and at 18 months, CPAP will be real tough.
If it is OSA, then surgery is the preferred treatment, and it sounds like you've had extensive conversations with the surgeons already re: what you might be able to accomplish surgically.  Any plans in the near future?
Stay in touch.
sleepydave

I dont have all the results yet, but I will post them when I get them. We did have the conversation about it being osa instead of csa but they were pretty certian it is csa. She has some CNS defects that cause moderate hypotonia also.

We have talked about surgery but her adenoids and tonsils are perfcet. Seh as an Submucus cleft palate so doing surgery to remove these things greatly decreases her chances for sucessful speech.

Thank you for all your imput.


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SAHM to 4 kids. Bryn 18mos, PRS with Core Hypotonia, Centeral& Obstructive Apnea, Dysphagia, Raynauds Disease, Kyphosis & Lordosis.
Mady5, Aidin 4 & Adam 10

I meant to mention that we had it done in the Hospital for Sick Children in Toronto by a Cardiologist.

I saw in another post you suggested to take the data to a sleep phycologist...do you recommand that for us also?


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SAHM to 4 kids. Bryn 18mos, PRS with Core Hypotonia, Centeral& Obstructive Apnea, Dysphagia, Raynauds Disease, Kyphosis & Lordosis.
Mady5, Aidin 4 & Adam 10

Hi Jenna:
The sleep psychologist usually has a much greater understanding of all of the finer nuances of sleep, such as behavioral issues (insomnia, poor sleep hygiene, unexplained sleepiness, etc.) and back of the book stuff.  The actual mechanical issues might better be dealt with by the ENT.  The central apnea causes may receive comment by the neurologist.  But you have to consider the individual himself, if you've got a pretty sharp guy in any of the specialties, maybe you can rely on him, cause he could privately consult with the others as necessary.

So the sleep psychologist may be a good resource, especially if you need a swing vote in the diagnosis or predicting outcomes.  Certainly leave no stone unturned at this point.

BTW do you have ENT consultation as to what you can expect?

Tracheostomy could be a back up plan if necessary.  Chronic low oxygen saturations will compound all of your problems, and they're going to have to pick a number where doing something becomes mandatory.

Simple supplemental oxygen may be considered.

But also, while the use of CPAP is difficult, it's not impossible, and might be a shot even if they are truly centrals.  There are nasal cannulas made for infants, and the larger sizes could cover you till you need to use a mask.  The set-up is a little more involved than the "routine" CPAP tho.

Here's one style:



Hoping to hear back.
sleepydave