I need some help here!

We got her sleep study results. She is 2 and weighed 28 pounds at the end of the night, which means in the morning, she is probably about 26. anyways, They said that she has moderate obstructive sleep apnea. His recommendations were based on VERY LIMITED information provided in the form I had to fill out so it was hardly based on her history, just on what he found out through the study. He believes that she may benefit from surgical evaluation and correction of the upper airway. Only problem with that is that Quinn has never had large tonsils and adenoids. She does however have low tone and this is what I think they should be considering. I'm scared as hell to put her through yet another surgery considering that this might not work and the potential for serious complications given her history. To be quite honest,  I think it would be safer to put her on oxygen at night rather than a surgery that may or may not work and that may prolong things as well as stop the progress that we have been making with eating and her overall health. In my personal, mommy opinion, I think that putting her through a surgery will only make things worse in the long run. This is my own personal opinion, however, and based upon her history with all of her other medical issues included.

Here are some quotes directly from the report:

"demonstrated moderate obstructive sleep apneas, with an index of 8.7 events per hour, with an index of 16.8 events per hour in supine position and 46.2 events per hour in lateral position(s)"

"Patient's respiratory events were significantly worse in REM sleep. Oxygen saturation was noted to fall as low as 85% ... moderate snoring was noted independently of sleeping position."

"ECG showed NSR" (please, if you can, what does that mean?)

RESPIRATORY ANALYSIS
"The overall obstructive apnea index was 8.7/hr. During Non-REM sleep, it was 6.3/hr., during REM sleep it was 20.3/hr. The index was based upon 0 central apneas, 10 obstructive apneas, 0 mixed apneas and 41 hypopneas. 51 total apnea/hypopneas.

the apneas were accompanied by noted lowest oxygen desaturations to 85%."

this was only the 5 hours of sleep they recorded. I have no idea about her Co2 levels since it is not noted on this study.

Any thoughts? We have an appointment with the pediatrician on Friday, genetics/metabolic tomorrow and Neuro and GI on the 5th. any ideas on what i should emphasize? Would oxygen benefit her?

THANKS!!!

*a couple of other questions: Why is this not being taken care of promptly? Shouldn't she be on something until then to alarm me of episodes at least? does the pediatrician order the equipment if necessary?

I agree that the low tone should be the first step in solving the problem. My brother had very similar results and the doc doesn't think it is T and A, so he ordered a cpap and wants to see if it helps at all. I have known of a few 2 year olds with cpaps and do remarkably well.

Keep asking questions. Eventually, someone will have to give an answer that makes sense...

Tiffany

"ECG" is electrocardiogram. "NSR" is normal sinus rhythm (meaning a normal heart rhythm). Nothing to worry about there.

Your little one's results seem to me to be unusual for having a much higher rate of apnea and hypopnea while on her side (usually, at least in adults, problems are worse when lying on one's back, when position makes a difference). My guess is that your daughter had very little REM sleep on her back and much more REM sleep while lying on her side. Her full sleep study report might well confirm this.

It looks to me like your daughter's primary problem is obstructive apnea but it would be good to ask her sleep specialist whether there was any attempt to distinguish between obstructive hypopneas and central hypopneas. (Be aware that many sleep labs don't make a distinction and some sleep specialists may not believe that a worthwhile disnction exists).

I am not a medical expert, nor am I a sleep professional and I am not particularly expert on pediatric sleep apnea. I am given to understand that obstructive apnea in children usually responds well to a T & A procedure, although tissue has been known to grow back. However, I cannot say whether this would be best for your daughter. I am not familiar with her history and it may very well be that she might not be a good surgical candidate for the reasons you allude to. The other question worth asking (which you may have already formed yourself) is whether the surgery is likely to be helpful (assuming that low muscle tone may be a major factor) for your daugter.

You can ask about the O2. It is often the case with adults that low O2 saturation levels are very brief and I would encourage you to ask your daughter's doctors to look more closely at her baseline O2 levels, her average O2 level and her average drop during apnea/hypopnea episodes. And have them explain it to you so that you have a better idea of how your daughter is doing overall with her O2 levels. CPAP, as Tiffany has suggested, may be a more helpful option than O2 and it is worth discussing with your daughter's doctors as well.

Best wishes to you and your daughter.

Bill

It sounds like you've gotten some good advice and explanations already.  I'm glad that your wait is finally over and that you have some results.

My son also has low muscle tone and has gone through multiple surgeries and procedures.  He did well for most of them (although he's turning out to be allergic to the meds....) but the last one, which was to repair his velum, left him with increased obstructive sleep apnea which is why we initially did the first sleep study.  He apparently takes longer to heal (Ehlers Danlos syndrome) and also because of low tone (Sotos syndrome) already has problems with his airway.  I don't know what's best for your child, but if you do decide to go the surgical route, make sure that you find the best doctor available to you and make sure that they're aware of the low tone issue.  

Cpaps can make a huge difference, if the child is able to tolerate them.  Because of my son's low tone, the lowest pressure setting (4) would have been too strong for him to breathe through, even if he did tolerate the mask.  That may be something else to consider.  

I'm glad that there is a little more activity here lately.  It's very nice to be able to talk to others who have children with sleep issues.  

Oh, on p-2-p, I'm still shelee.  :)