Mothering › Forums › Parenting › Special Needs Parenting › Can I get the sleep peeps to talk sleep study results?
New Posts  All Forums:Forum Nav:

Can I get the sleep peeps to talk sleep study results?

post #1 of 7
Thread Starter 
We saw the ENT today to discuss the report, and what a day to do it - after two more-horrible-than-usual nights of sleep (and afternoons of behavior, gee go figure) in a row.

The summary is that they didn't actually have any apnea events, and each had 2 hypopnea events. That clearly makes it a negative test for sleep apnea. However, Lillian had 42 arousals during the study period (approximately 7 hours) and Kate had 100. The doctor couldn't give me an average number for arousals in a normal child, but I googled around and the number I've found most frequently seems to be approximately 3-7 arousals per night. (If you have other info, please share!) In addition, Katie snored loudly and talked in her sleep quite a bit, none of which is really news to us.

So, what it all means is a little less clear than the numbers. Their ENT feels pretty confident that their "humungous" (his words, I swear) tonsils are causing some sort of respiratory disturbance--they briefly partially obstruct the airway, which causes them to wake slightly and lose sleep quality. So it's not recorded as an actual apnea or hypopnea event, because air is still flowing, but just the extra effort required to take that breath screws up their sleep. Given that Kate has the larger tonsils and also had many more arousals, I think that's a pretty reasonable hypothesis.

Either that or it's some kind of psychosocial issue and we need to see a ped psych. Cool.

But right now I'm inclined to work on his assumption that it's the tonsils and adenoids, because it just seems to make sense. Does that sounds reasonable to you? I don't want to be so desperate to help them that I subject them to unnecessary surgery, but I also don't want to be so desperate to avoid surgery that no one here sleeps for another 4 years, KWIM?
post #2 of 7
I'll give thoughts but I am not an expert in this area!

I've got mild apnea and Upper Airway Resistance. My son had multiple arousals like you see (I can't remember his number but it was really high--enough they were "concerned" but nothing came of it). He had several apnea episodes (not enough for sleep apnea though) and that's all we got with him. Not all labs can find Upper Airway Resistance but I am nearly certain that causes my son's arousals. It is hard to say of course because sleep labs aren't know for quality sleep and on their own can cause arousals in my mind. In my case it is certainly respiratory related. I was coming out to recover the airway rather than going into apnea. I was aware I would wake in a panic. Of course I was partially waking far more often than even that. On a sleep study without video mine showed frequent coming out of deep sleep, less of certain stages because of that, partial arousals, etc. All UAR related in my case.
http://www.centerforsoundsleep.com/U...e-Syndrome.php
I don't know where that puts you and if the ENT's ideas will help. Mine is improved with a mouthpiece that is changing my jaw and tongue placement. If the adenoids, etc. are blocking the airway they certainly could be responsible for those arousals in my mind.
post #3 of 7
I'm going to be lurking here...

Connor has a sleep study coming up sometime (yet to be scheduled, waiting for the referral to go through). At one point he did have rather large adenoids, but we can't remove them because of his palate, and we can't do steroids to shrink them because of his immune deficiency.

He does have a small recessed lower jaw, so it wouldn't surprise me if it's an issue of anatomical obstruction, his tongue maybe. But I don't know what to do about that...as an infant he had to be a tummy sleeper for this reason, but now at age 3 I can't keep him on his tummy (although I've noticed that he often ends up on it anyway).

Anyway...I'm not hijacking...I'm watching and learning!!!!
post #4 of 7
Thread Starter 
Lurk away, 2boyzmama! I've probably read every sleep study/tonsil-related post on MDC at this point, in hopes of gleaning some hopeful information.
post #5 of 7
Thread Starter 
Quote:
Originally Posted by sbgrace View Post
I'll give thoughts but I am not an expert in this area!

I've got mild apnea and Upper Airway Resistance. My son had multiple arousals like you see (I can't remember his number but it was really high--enough they were "concerned" but nothing came of it). He had several apnea episodes (not enough for sleep apnea though) and that's all we got with him. Not all labs can find Upper Airway Resistance but I am nearly certain that causes my son's arousals. It is hard to say of course because sleep labs aren't know for quality sleep and on their own can cause arousals in my mind. In my case it is certainly respiratory related. I was coming out to recover the airway rather than going into apnea. I was aware I would wake in a panic. Of course I was partially waking far more often than even that. On a sleep study without video mine showed frequent coming out of deep sleep, less of certain stages because of that, partial arousals, etc. All UAR related in my case.
http://www.centerforsoundsleep.com/U...e-Syndrome.php
I don't know where that puts you and if the ENT's ideas will help. Mine is improved with a mouthpiece that is changing my jaw and tongue placement. If the adenoids, etc. are blocking the airway they certainly could be responsible for those arousals in my mind.
Very interesting. I read some of the pages and could certainly accept the possibility that this is what's going on with them.

I'm bugged right now that the I don't have a full copy of the report, and the ENT really went through it fairly quickly while I was there. I think I need to get myself a copy, for my own peace of mind and research.

ETA: Well, that was easy. I called the sleep center, they're going to send me a release form to return, then I can have a copy no problem!
post #6 of 7
Thread Starter 
Well, I'm glad I ordered the reports because there's stuff the ENT didn't bother to mention (probably because he didn't think I'd understand, despite the fact that he asked me if I was a doctor after some of the questions I asked him at our first visit in February ). Both girls had a sinus arrythmia, which Dr. Google said is quite common in children. Still worth mentioning.

Although neither had apneas and only 1-2 hypopneas, both of them had several desats, Lilly going down to 90 one time. Both of them had an average O2 sat of 96%.

Both the discussion areas said that they had significantly fragmented sleep architecture. Kate's report said that of her 100 arousels, 29 were RERA's - respiratory effort related arousals. But none of Lilly's 42 arousals was deemed RERA. Still, the recommendation on both is ENT eval of the upper airway, and if sleep issues persist, a sleep specialist eval.

I wish I knew enough to interpret everything, but from what I'm reading here, the ENT does seem to be making a reasonable recommendation. Still, we're going to the pulmonologist on Monday with Kate, and I'll get his opinion, then I'll make sure their ped has the reports and get his opinion. I'm pretty sure they're all going to agree with the ENT, but more eyes can never be a bad thing.
post #7 of 7
coming out of lurkdome...we have a 26 month old who had a sleep study last summer, the results were mild apnea with recommendation to see an ENT. We also had an MRI which we brought with us to the ENT, so glad we did. He was able to post the images for us and show us how enlarged our son's adenoids were, basically, so large he was only mouth breathing. He recommended we remove the adenoids and wait on the tonsils (extremely enlarged, but super painful surgery). We had the adenoids removed, and still are not seeing much improvement in sleeping and no real eating. Our new neurologist wants us to remove the tonsils to help facilitate sleeping. We are planning on removing his tonsils this summer...not looking forward to it, but if you do decide to remove the tonsils...ask about pain medication in suppository form...

hth - Tiffany
New Posts  All Forums:Forum Nav:
  Return Home
  Back to Forum: Special Needs Parenting
Mothering › Forums › Parenting › Special Needs Parenting › Can I get the sleep peeps to talk sleep study results?