Got my daughter's study results

SleepingUgly wrote:

SleepyonMagnoliaSt wrote:My daughter's pulmonologist is the #1 in our state so it's practically impossible to get an appointment sooner with her.

Then get her on the phone if you need an answer sooner than the appointment.

Also that's part of why I'm confused! Her pulmonologist IS a sleep disorder doctor! So why are we being sent to a separate ENT?

OK, good. Then the pulmonologist needs to explain the sleep study results to you. I assume the ENT is to help determine whether surgery would be beneficial.

At the last appointment she had with the pulmo she said that her tonsils were slightly enlarged but she wasn't sure if they weren't large enough to really cause any issues.

Yeah, been there... It would be an easier decision if her tonsils were huge.

On top of all this my husband is VERY anti surgery. He says unless they can look into her throat and say 'wow they are so huge that's for sure what is causing issues' he'd prefer the cpap over surgery (he had his out as a kid and almost died from bleeding issues)

Wow, you two have some terrible childhood experiences related to your mouths, huh?!

I'm frustrated and being a mom is hard.

Tell me about it... We saw two top sleep docs in pediatrics. One said our son had OSA. One said he did not. What does a parent do with THAT information?! Meanwhile, he did have a T&A for what we thought was SDB. I haven't lost any sleep over having done that even if he doesn't have OSA, but then again, I didn't lose any sleep about my decision to have a tonsillectomy myself for my SDB while in my 40's. Course if either of us had almost bled to death, I might feel differently about it!

It seems like some ENT doctors are certified to treat sleep apnea from what I'm reading?

There's nothing to stop an ENT from getting boarded in sleep medicine. I think many just say they specialize in "sleep apnea" because they see a lot of it.

I know I mentioned this to you before but once again, I'd add to your list of questions to ask the ENT whether they would recommend a total tonsillectomy over a partial given that you're doing it for airway reasons (assuming they would recommend a tonsillectomy at all)...

SleepingUgly wrote:I'm sorry to hear you lost a child. I can't even imagine how difficult it must be to cope with that kind of impossible loss. You'll get second opinions and satisfy yourself that you've left no stone unturned. It doesn't sound like something that has to be done tomorrow, although admittedly summer would be the best time to do surgery (although could be winter break as well), IF you're going to do it.

SleepyonMagnoliaSt wrote:Thank you for talking me through all this and for the information! I've been taking notes

stage0 wrote:I think you are becoming more confident for the ENT visit...some suggestions for the visit are 1. Bring along you 3 rd trimester experience. Especially if her birth Wes normal and full term. This is when lung function is established...as memory serves; 2. Start a journal to document sleep patterns. Document time to bed and up, foods eaten for allergies, daytime sleepiness, AM headaches, electronics usage,and whatever else you want to track; 3. There are IPhone apps that will record snoring...these are sound sensitive. Nothing like the real - time audio to show not only snoring, but lung sounds like labored breathing, wheezing and rails.

SleepyonMagnoliaSt wrote:Came away from my mom's house with some interesting info today. My aunt is an RN and was visiting. She sat down and looked in DD's mouth. Her tonsils are not swollen or even slightly enlarged.

Of course we know nothing about her adenoids. But her tonsils? Are staying 100%

This well reported finding was also confirmed by our study, where a correlation between clinical tonsil size and severity of OSAS was not established. This is, however, not unexpected as on direct inspection, only the superior portion of the tonsil is seen, which does not reflect its true size and shape. This is further supported by our finding that there was no relation between tonsil size assessed clinically and the TP ratio.

SleepingUgly wrote:My tonsils were actually bigger than the ENT thought, as some was buried in the fossa (or whatever it's called).

I know you are nervous about surgery, but there is no risk involved in meeting with an ENT or two and just hearing what they have to say. Maybe they will say they don't think it would benefit your daughter, and then you can forget it. Or maybe they'll tell you something that will make you think you should do it. It is better to make a decision based on knowledge, rather than fear.