Sleep Apnea after T&A?

[ourangelalicia]

For those who's kids had the T&A, and then still had sleep apnea what was the next step? Ali's apnea monitor has been legitimately alarming about 5 times each night. She had the T&A done in October but we haven't done her follow up sleep study because between the illnesses and seizures there hasn't been a good time. Everytime we schedule it we end up having to cancel it. Now that we have the apnea monitor and I know she still has sleep apnea, I know the sleep study will come back bad. I know that CPAP is supposed to be the next step but there is absolutely no way Ali will go for that. I practically have to tie her down to do a breathing treatment, she screams the entire time, it is horrible. No way would she sleep with something on her face.

Are there any other options or is that the only one??

[Becky]

HI, Justin had real bad apnea after his T&A were takin out and we did two differnt surgerys and he now has no apena at all.
The 1st surgery they went in and micro waved the back of his tongue so when it healed it would bring the tonuge from the back of his throat, it helped but he still had apnea, we were told it might take more then one surgery to fix, the second surgery they did same plus they took two inches off his tongue and he has no more apena.
If you would like to email me I will go into more detail on what they did and how he did with the surgery.
[e-mail]
Becky

[christie]

Chelsae ~

Chris is 12 had T&A and still has sleep apena For us they told us the next step was the CPAP and ALL agree there is NOOOOOOO way that is gonna work, not with my little man

They want Chris back for another sleep study but I have put it off to be honest, cause if the only thing left to do is the CPAP whats the point

Although I do know this has to be followed up, Just wanted to say I can relate ~

CC

[Ericsmomma]

Chelsea,

Its so weird that you posted this today....I've been thinking about the same thing!! Eric definetley has sleep apnea, chronic sinusitits, snoring etc. he has been seeing an ENT in town. He wanted to do a CAT scan of the sinuses. Well, we can't get Eric well enough to do it (2 months)..as soon as we do a ten day course of antibiotics, he's ok for a few days, goes back to school, and wham!! another bout of snotty green nose!
Anyway, I took him to see the Chief of Otolaryngotomy
(ENT) at hospital in Cleveland...He looked one time into Eric's throat and said..he needs a T & A...He was in the room with us a total of about 5 minutes! He scheduled the surgery for two weeks from then, but we had to cancel because Eric was still snotty and croupy and I didn't feel comfortable doing it while he was sick.
We are now trying to reschedule, but the Ent doc never has spoken to us since, not even to see how he's doing..I'm a little nervous about this...I hate to put him thru a surgery and it doesn't help. And I'm leery of a doc who doesn't really know his patient...it just seemed like a "fast" diagnosis. I'm sure he DOES have enlarged tonsils and adnoids, but I worry about the surgery.
And if it doesn't really help, I'll feel terrible.
I just want this little guy to "BREATH" and sleep soundly.
It breaks my heart to hear him struggling and being so restless. I'm glad you brought this up...is some comfort to know that others are going thru the same situation.
thanks....Dolly

[justinsmom]

Dolly, our ENT did the same thing with Justin and Ashley in the room for hours for the doc to come in look in mouth took a total of 2 mins. But I seen their tonsils and I didn't need the ENT to tell me they needed out LOL. OMG they were HUGE!!!! and they weren't even sick. Not trying to stick up for the doc but sometimes they are just soooooooo HUGE there is no missing them KWIM? Now for the original question, since their T/A's Ashley still snores like a Mack Truck lol, but that's ok at least no more apnea, now Justin he has been fine up to this point I just made him an appointment with the ENT for an evaluation of sleep apnea again sigh hopefully it's just this Michigan weather.

[wrblack]

Charlie is scheduled for T&A at CHOP tomorrow. Don't know if we'll have to cancel. Both he and his little brother have been fighting with a virus, I think, for the past couple of days. Trying to consult with Dr. Harry and then will consult with CHOP nurses to see if we can proceed.
My understanding is that T&A has an almost 100% effective rate in improving OSA in kids without Ds and has about an 80% success rate in kids with Ds.
When T&A doesn't take care of the problem, next step is CPAP. After that some might say move on to BiPAP but others would say CPAP properly done is just as effective. If CPAP doesn't work, don't bother trying BiPAP. Last resort is tracheostomy. Pretty brutal last resort but almost guaranteed to work. But you'd be trading dealing with OSA for dealing with a trach. But, if you were looking serious pulmonary hypertension in the face, that might be a pretty good trade.
I, of course, hope we won't go there. Hope we'll be able to get the T&A done tomorrow, and it'll do the trick. Charlie's OSA has been characterized as moderate, and his tonsils and adenoids have been characterized as huge. Leads us to believe T&A has a real good chance of doing the job.
Oh, if anyone would like to send good thoughts, positive vibes, well wishes, our way, it would be much appreciated. Being an unbeliever, I'm a little hesitant to ask anyone to pray for us. But, hey, I'll take all the help I can get. If anyone is any good at praying and would be so bold as to say a little one for us, I'd be quite thankful.
And further oh, if any of the believers among us have ever wondered what God smells like and/or looks like, they might enjoy checking out this link,
www.snopes.com/glurge/rain.htm
And final oh, maybe that is what would really help. If any of you have former preemies with Ds, like Charlie, maybe you could ask them to put a good word in for Charlie and his loving mom and his foolish old dad. -- TIA (thanks in advance), Bob

[christie]

Awwwww BOB, my thoughts and well wishes will be with you guys tomorrow.

Prayers being sent that ALL goes well with the T&A, if CHARLIE is better and they go thru with it.

Let us know as soon as you can, PLEASE

CC ~

[Jodi]

Now you got me thinking...

Ryan had T&A about three years ago. His ENT said there was really no question - it was a no brainer. Both were huge. We stayed 2 nights at Children's hospital in LA. (Flashback - we had to stay in the cancer ward because they were short on beds. We were there two nights, and watched as two families said goodbye to their children - absolutely heartbreaking!).

Anyway - Ryan is doing soooooo much better - he made huge strides in development in the first year following his surgery.

However lately I noticed he is snoring again and it appears like he stops breathing a little - nothing like before, but enough that now I've read these posts I think I'll call the ENT!

Sorry but I have no suggestions

[wrblack]

Sorry to be tardy with this link, www.ds-health.com/abst/a0503.htm
<< Down Syndrome Abstract
of the Month: Mar 2005
Causes of persistent obstructive sleep apnea despite previous tonsillectomy and adenoidectomy in children with Down syndrome as depicted on static and dynamic cine MRI. >>
But I just stumbled onto it today. And it seemed highly relevant to the original question. -- Bob