We just had an appt for a third opinion, this time at the big research and teaching hospital.  The dr took a lot of time with us and seemed quite thorough and knowledgeable.  

Her findings are that our son's tonsils are large but not too large - that there is still a space between (she held up her fingers to indicate 1/2 an inch) but that his adenoids are very large.  She had us do a hearing test and it confirmed that he had large build up of fluid in the ears, she indicated that this also confirmed that it is the adenoids which are really the problem.

So she recommended a Adenoidectomy only.  No tonsilectomy.  She said we could always do later if we need to but the passage wasn't totally blocked.

I have been trying to find research on the efficacy of a Adenoidectomy only.  I mean I can't believe that in most children the tonsils and adenoids are equally large, surely one is usually bigger than the other and yet from what I have read, a T&A is usually done together and there must be a reason for that.

I just want my child to breath at night (and during the day).  I too felt that the adenoids were a bigger problem as he is such a mouth breather.  But stating that his tonsils are large but not too large bothers me because I want him to breathe FREELY and EASILY for once.  To me I think of how I feel when I have a cold and one side of my nose is stuffed, yes I can still breathe out of one side but I can't breathe  freely and it bothers me and I don't want my son to feel that.  

If anyone has advice on the following:
1. were their child's tonsils and adenoids equally large or was one larger than the other and did the dr explain why he still wanted to do both a T&A
2. has anyone had the experience or know of anyone who had adenoidectomy and had to go back to again for the tonsilectomy and why?
3. right now it's clear he needs something done but if we do the adenoidectomy and his snoring is reduced how can we be sure he's really sleeping properly unless we have a sleep study?  I mean I agree the adenoidectomy will probably take care of most of the problem but I want 100% if possible but I think the symptoms won't be as obvious so how will I be sure? any experience with this?
4. Also, I thought you can't see the adenoids from looking in the ear or mouth but this is the second Dr who has stated his adenoids are large just by examining the mouth and ears.  Does anyone know if this is possible?  

Yes, I am the same person who had the post a few weeks ago about a tonsilectomy only.  This is so frustrating and we live here in Europe at the moment and there is a language problem for me and they do things differently.  My son is beginning to be uncooperative at the drs and I am afraid if we do adenoidectomy, it may be impossible to get him back in to do a tonsilectomy later.

Thanks in advance for all help!

You must be pulling your hair out by now! It's so frustrating to watch your child struggle to breathe while doctors dilly dally about treatment. Sleep apnea can be so confusing anyway I can't imagine having a language barrier on top of it.  

Your definately asking all the right questions.

1. My son's ads and tonsils were equally huge.
2. No experience with this personally, but I would certainly say it's very possible.
3. You are absolutely right. Unless you see with your own eyes 100% improvement post-op, you will still have doubts about the effectiveness of treatment. I'm kinda going through this myself right now. My son seems to be sleeping so peacefully now since surgery....but yet I doubt the SA is gone completely because I still see mild effects of SA during the day (dark circles specifically.)
4. No. It is not possible to see the adenoids simply by looking in the ears and mouth. However, you can see the effects of enlarged adenoids by looking in the ears/mouth. The doctors are assuming his adenoids are big because of conditions, the effects, they are seeing in his ears. The only way to acually see adnoids is with a catscan or the use of a small mirror through the mouth.

I agree with everything you said in your post and I would be thinking the same things. Even if his tonsils arn't "too big" what's the point in leaving them in if there's the slightest chance they too are causing the apnea? The last thing you want is for your son to have to go through one surgery only to not have complete success and have to have a second surgery. Why not kill two birds with one stone? That's the way I would look at it. But this is just my opinion....I'm no doctor.

On several occacions I told Caden's pediatrician that he was doing this odd thing all the time during the day where he would suck in a big gulp of air (I don't know how to describe it exactly.) This was way before I realized he had apnea, but I told her I thought he was doing it because he was having trouble breathing. Guess what she told me? She said it was just a nervous tick! When we talked to the ENT about sleep apnea, I told him about his little habit, and the ENT said he was probably doing it because he can't catch his breath! Since his T&A he hasn't done it once! Just thought I'ld share that with you, because it's a perfect example of how doctors can be very wrong.  

I hope this helps, hang in there.

kim

My dd Christina  (now 8) had just her adenoids removed.  Her tonsils have never been enlarged and she has only had strep throat once.  I was shown and x-ray of the side of her head.  In the x-ray they showed me her adenoids and how they were completely blocking  her airway.  We had a second opinoin from a doctor we trusted and knew would not jump at the opportunity to operate without cause.  He seconded the need for the adenoids to go and said the tonsils could stay, although if she had recurrent strep throat they would need to go back and remove them later (almost 1 year and no strep or other problems   ).  We did have a post op sleep study that still showed apnea, however a follow-up to the follow-up showed that for now she does not have apnea.  Without a follow-up sleep study you won't know for sure the apnea is gone.

Christina's daytime breathing greatly improved with the adenoids gone, she is no longer a mouth breather.  I'm glad she only had the adenoids out.  She had such a horrible time breathing after surgery that I am afraid of what would have happened if we had removed the tonsils as well.  If she has to go back for her tonsils, then so be it.  She will be older and better able to tolerate the anesthesia (she becomes very sick from anesthesia, even gas is a major issues).

I will mention that the 3 pedi-pulmonologists have all been surprised that they only took the adenoids.  Apparently it is not common to just have the adenoids removed, but it worked for Chris....for now....more sleep tests to follow due to RLS/PLMD.

Susanne

Thank you both for your replies.  It's a great help to hear others experience.
 
Our ENT has been on vacation so we have not been able to follow up with our questions yet but something AMAZING has happened and I have to ask once again for anyone's experience with this.
 
We happened to have an appt last week with our son's new pediatrician who is both a MD and homeopathic dr.  She did a 1.5 hour "get acquainted appt" as he is a new patient.  One thing she mentioned to us is that it sounds to her like we give him too much milk.  He still drinks bottles in the morning and night, and it adds up to about 60 oz a day.  She said that's too much protein (which we kind of knew but didn't think it was such a big deal) and it could be the cause of his adenoids growing to large or it could be he's having an allergic reaction which makes them swell.
 
So we last week we cut down vastly on milk, he gets about 15-24 oz now compared to the 60+ and for the first time that I can remember NO SNORING!  He even has a cold right now but he breathes quietly and peacefully!  I slept with him last night because he's a little sick and several times I had to lean close to him just to make sure he was actually breathing!  I'm not used to him breathing quietly while sleeping at all.  My husband and I don't really know what to make of this yet, it seems almost too good to be true.  On the other hand, while awake, he still seems to be mainly breathing thru the mouth so not sure why that would be if he isn't snoring.
 
But I was always wondering what caused their adenoids and tonsils to be large and this is the one area which I couldn't really find info on or research on.  Today, when I did a web search for "milk and adenoids" and I did come up with sites which other drs have mentioned a connection between dairy and breathing problems, such as www.drbriffa.com has a page on "why removing tonsils is not usually the answer for children who do not breathe easily".  
 
Anyway, I was thinking of you too Kimisita because you mentioned that your son still has the dark rings under his eyes (possibly a sign of allergies) and wondered if you had found a connection to dairy if he eats any.

Glad to hear the little one is sleeping better........... I would still keep a very close eye on it as I am sure you will and already know. If he can avoid surgery all the better!!!!!!! My son just had both out and from what I understand it is much easier on them if they only get the adenoids done. Keep us posted on his progress. Keeping my fingers crossed for you both.

Hmmmm.....very interesting about the milk allergy. (you know, I wonder if it's not so much the dairy as it is all the "extra" stuff they put in milk these days like hormones and stuff making kids sick.)

Caden is not much of a milk or dairy guy, but he does eat a lot of things with dairy in it - his favorite snack is cheese crackers....so....maybe he is dairy intolerant. I wonder if that's why he had colic so bad when he was a baby. He spit up everything! Breast milk, formula, soy formula, rice cereal....he couldn't keep anything down.     ?????????????

Keep us posted on how its going.....I'm very curious to see what you find out.


Kim