A & T for a 4 year old without a sleep study??

[Sleepymummy]

Hi, my 4 year old is scheduled for a T & A procedure in a few weeks due to suspected OSA. She has suffered from extreme daytime sleepiness since she was about 16 months old. She has extremely large tonsils (about 1cm from touching). She also sweats a lot at night and I hear her taking deep breaths every now & again, but only occasional light snoring.

We were referred to an ENT specialist and he very quickly said that a T &A is required.
I am very keen for my child not to be tired anymore but I am a little uneasy with the thought of her undergoing surgery when a definite diagnosis has not been made.
My question is has anyone else had this, where no sleep study has been advised? The ENT also said that sleep studies weren't always 100% and may not show up an issue, what are people's experiences of this?

Any advice appreciated, confused!!

[APAAW]

I think sleep studies are closer to 100% than any type of surgery can be. Sleep studies are also easier to recuperate from.

I'd hope there's a pediatric pulmonologist or pediatric sleep specialist somewhere in your vicinity; consulting them would the next step I'd want before surgery.

FWIW - I had a tonsillectomy myself when not much older than your daughter, and a couple of sleep studies in the past 6 years. (Note that the tonsillectomy didn't keep me off CPAP indefinitely - of course no such thing as CPAP existed that long ago.) My daughter's had a couple of sleep studies as well - no tonsillectomy yet though.

One more option that even her primary care physician could order would be an at-home sleep study. Waiting lists might be a bit shorter than in-clinic, and so your chances of having results before surgery might be better. I'd think an at-home sleep study would be lots easier on a child. (An option would be the sleep study service associated with "TheLankyLefty27" on YouTube. I have no association with it, other than having benefited from educational videos there.)

Obviously there are lots of options here. Hopefully parents who've gone further down this path than I have, can share their experiences with you. Please PM me if you wish too.

Please keep us posted!

[justMongo]

I assume T&A means Tonsillectomy & Adenoidectomy. When I was a lad, about 60 years ago, seems like every young person had that procedure except me. I have no idea if that contributes to my Obstructive Apnea (OA) today -- I doubt it.

Back then it was done because there was a belief it reduced sore throat.
Sleep apnea was seldom a consideration (if at all.) Sleep studies are relatively new in my lifetime.
Not until technology and the xPAP machine did it become a common thing to look for;
although hypo-ventilation syndrome was known long before I was born.

I would ask for a second opinion from another ENT -- likely they'll also advise a T&A.
Keeping in mind, I am not a doctor, what you describe sounds like just cause to snip them out.

I understand your concern as there is risk in all surgeries.

[retired_guy]

I understand your trepidation about this. Anytime they say they want to do something goofy to one of our kids we tend to be that way. A diagnosis of needing to remove the tonsils because they are so large seems to me to be one easily made. Whether or not they also need to remove adenoids should be questioned as usually they do that "just because they can."

I would get another opinion, but I would not be too fearful of the surgery. They're very good at this sort of thing, and it's better to do now than when your young one is older.

All will be well, good job mom, looking out for your little one.

[PaulaO2]

If her tonsils are so large they are 1cm from touching, why are you (or they) concerned about sleep apnea? I'd be more concerned about choking, infections, immune issues, sinus issues, etc.

I wonder if they are saying "sleep apnea" as a way to get the insurance to pay for it?

Have those things taken out. She won't miss them. We fought all of my childhood into my adulthood to have mine out. They were constantly causing issues with infections, swelling, illnesses, all that. When they were bad, the excuse was "we have to wait for the swelling to go down". When the swelling went down, it was "they look fine now". I was 25 when they were finally removed and I felt wonderful (once I recovered)! Did their removal stop my snoring? Nope. Were they in any way related to my sleep apnea (which went undiagnosed for another ten years or so)? Who knows.

[trish6hundred]

Hi Sleepymummy,
WELCOME! to the forum.!
If you are concerned that this ENT seems to be a bit knife happy, get a second opinion. Although, if her tonsils are that large, you might want to have them taken out.
Keep us posted and best of luck to you and your little girl.

[archangle]

There are a lot of chop happy surgeons, but this sounds like a case where it's a good idea. You might ask your regular doctor or get a second opinion from another specialist.

From the discussion, it sounds like she might need the surgery, apnea or not.

Tonsillectomy has gone from being done at the drop of a hat to being afraid it has some minor long term effect on your immune system. I think they have now decided it's not as bad as the naysayers thought it was, but should still only be done when needed.

Good luck, and and best wishes for your daughter.

[DNB128]

Well, I can say that my "T&A" about 65 years ago when I was your daughter's age was done because I had hearing loss, and the docs thought it might be partially related to my enlarged tonsils... it didn't fix the hearing loss, but may have lessened it, and I've worn hearing aids since I started school. Enlarged tonsils are, I understand, precursors of many things, and it could be a good thing to do. It's probably way to soon to worry about OSA for your daughter, and it's better to have it done when you're young... I know people who have had this surgery as adults, and it's a much more difficult recovery for adults than for children. If your daughter is otherwise healthy there's probably nothing wrong with doing it now, but if it gives you comfort to get a second opinion, then by all means do so.

[Sleepster]

We were referred to an ENT specialist and he very quickly said that a T &A is required.
I am very keen for my child not to be tired anymore but I am a little uneasy with the thought of her undergoing surgery when a definite diagnosis has not been made.
My question is has anyone else had this, where no sleep study has been advised?

Hi Sleepmummy. I think you should call or email the doctor's office and ask how they arrived at the conclusion that removal of the tonsils and adenoids is required. Specifically ask why a sleep study is not being recommended by the doctor.

My guess is that a simple examination revealed that they need to be removed for a variety of reasons. It may be that a sleep study would make no difference in the decision process. For example if it's determined that she has sleep apnea the tonsils need to come out. If it's determined that she doesn't they still need to come out.

I have a co-worker whose daughter, a bit older than yours but still a youngster, suffered from anxiety and was grinding her teeth. When they removed her tonsils one of them was the size of a plum. She now sleeps better and no longer needs the night guard for her teeth.

I wish that something could have been done for me much earlier in my life to treat my sleep apnea. It would have made a huge improvement in the quality of my life. This surgery may be just what your daughter needs to prevent the development of sleep apnea.

If after the surgery she's still tired all the time you can explore other options such as a sleep study and CPAP therapy.

[Sleepymummy]

Thanks for everyone's help/advice , I will definitely get in touch with the surgeon and just ask for clarity on why they didn't order a sleep study . I had a heap of tonsil issues until my late 20's when they popped then shrivelled up and disappeared , I wished so many time I didn't have them. It's just so daunting when you are asked to make decisions on such a huge thing as surgery for your own kid who is your whole world. Will keep you all posted