Re: Tonsillectomy

[madiparkersmom]

Hi all! I'm hoping you can help me gain some BTDT insight on tonsillectomies. Here is the story (shortened of course because the WHOLE story is quite lengthy)...

Parker is 28 months old. He quit eating post heart surgery at 5 months old. He had an ng tube from 5 months until 12 months when he had surgery to place a g-button. He has been fed nearly 100% of his nutrition through the tube since that time.

We have made GREAT progress (although VERY slow) with therapies, etc. However, we are at a stand still. Parker won't swallow. He will actually bring food and drink to his mouth and chew on it, but he won't swallow. He either drools it out, picks it out with his fingers, or gags on it.

It has been noted by several doctors and therapists that Parker's tonsils are large (rated a 4 on a 4pt scale with 4 being the largest). His tonsils are almost touching. I *think* (although I'm not sure of course) that this swallowing issue at this point is at least partially due to his tonsils being enlarged.

While I know that his tonsils didn't make him stop eating nearly 2yrs ago, I think that it may be halting any progress we are making now.

There is also question of whether or not Parker has sleep apnea. We had a sleep study done this spring but it was inconclusive because they didn't get enough recorded sleep. They did however note that in the 12 minutes they actually recorded that he had 2 instances of hypopnea (breathing slowed but did not stop).

Our current ENT refuses to remove his tonsils. He says that tonsils can shrink around 3-4yrs of age and that there is a high morbidity rate with tonsillectomies. However, I do NOT want to wait 1 or 2 YEARS to see if his tonsils are affecting his not swallowing and I seriously doubt he will DIE from having his tonsils out. This ENT did remove his adenoids and put tubes in his ears last month (but just last week accidentally removed one of the tubes when he was trying to remove some sort of infection that developed around the tube - that's a whole other vent about this ENT)

My daughter had her tonsils and adenoids removed at 20 months. She came home that day and was back to her old self the next day. She does not have DS so I do not know if that is an issue or not.

We are going to get a 2nd opinion this Thursday. Before that though, I was wondering what your experiences are with tonsils.

What age was your child when he/she had a tonsillectomy?

What was the recovery time and how long was the hospital stay?

Did your child have any problems associated with the tonsillectomy?

Please share your story!

Thanks!
Tonya

[wrblack]

okey dokey. Since you asked, I'll give you our story. But I don't think you're going to like our story.
So, I'll start with a couple of points and then you decide when to stop reading.
Dr. Leshin recommends an overnight stay for kids with Ds. And it's not just the eating and drinking thing. Some kids with Ds have a harder time getting over general anesthesia. And, not knowing which kids at what point might get into trouble, it's just safer to keep kids with Ds overnight, hopefully just for observation. And I wouldn't argue with that.
2nd and maybe 3rd points, yes, tonsils can be relatively less obstructing after age 5 or so. Also, most kids who had heart surgery need to be cleared by cardiologist and check whether they need extra care, e.g. subacute bacterial endocarditis (SBE) prophylaxis. Think anesthesiologists usually insist on getting that straight.
Okay, our story, we waited and watched, my what big tonsils you have, for years. Finally, had sleep study that showed OSA. ENT said okay, maybe time to do something. Sent for x-ray study, and radiologist said, sorta, you think he's got big tonsils, you should see his adenoids. So, we scheduled T&A at CHOP, April Fool's Day 2005, age 5, almost 6.
Little stinker had been disgustingly healthy for months, but, of course, days before scheduled adenotonsillectomy decided to get sick. Upper respiratory thing, plus a little fever. So, I called our pediatrician. Dr. Harry said, are you stupid or what, it's elective surgery, if he were my kid, I'd cancel and reschedule. Being stupid, I called CHOP. Spoke with nurse practitioner, she said, go ahead and bring him in, if we need to cancel, we can cancel that morning.
Long story short, Charlie spent a long weekend, maybe almost as long for me as for him, camping out under an oxygen tent at CHOP. In hindsight, I think the oxygen tent did him a lot of good. But, if I had it to do over, I'd cancel and reschedule, even though that would have been a big pain.
So, my advice, I wouldn't push too hard for a tonsillectomy. Wait and see is sometimes a reasonable approach.
you asked, Bob

[Chris]

My older daughter (typical) had her tonsils and adnoids out when she was 28 months. She has a lot of bleeding and was in severe pain for a week. She was just uncomfortable and clingy for another week. Finally, after two weeks of holding her almost nonstop, she was back to her old self. She had tonsilitis five times in six months before her surgery and also had a chronic ear infection. Although her recovery was long, she was a very healthy little girl after the surgery. She still got an occasional ear infection but nothing like before the surgery.

My younger daughter (Ds, almolst 6) also has large tonsils but the ENT isn't concerned. We go back in a month to have her re-evaluated since she is still recovering from a nasty sinus and throat infection. I don't think her tonsils are any smaller now that she is older.

Chris

[dpurvis]

I'll make mine short and to the point. Ashleigh had her tonsils and adnoids out when she was five. She stayed one night at the hospital and came home the next day. It was pretty rough around here for about a week to ten days. I could tell she was in a lot of pain. And my child is the one where she tries to get off by herself when she's hurting...did NOT want to be held or comforted! It was awful...but after she got past that first week or two after surgery, everything was fine and back to normal!! Good luck with your decision!

[CC]

Christopher was 4/5 when he had his adenoids out and at that time he sailed right through no biggy at all for him BUT sadly for him the ENT said they were large, hence the surgery, but when they got out of surgery the Doc said Hmmm really wasn't that large after all. That was the end of that ENT

Chris is 14 now I think he was 10 or 11, can't remember now when they took out his tonsils due to sleep apnea they said. they tell me Christopher's tonsils were not large BUT extremely long, what ever that meant It was the worst ever for my guy OMG They let him go the same day and was a night mare for a few weeks He ended up being readmitted for a few days as he just shut down and would not eat, drink and not to scare you or anyone but honestly he would not even swallow his own saliva (sp?) he would just spit it out. He got very dehydrated so back to the hospital.

Finally after a few weeks he started to pull it together.

For us sadly having both removed did nothing to make it better for Chris Didn't help the sleep apnea at all

But that was our experience and from what I have heard is far from the norm.

Again I share this not to scare you but no one ever even hinted to me this could even be a possibility. For me I wish I had heard the worst that could be, just to be prepared KWIM. But all I ever heard is no biggy at all, he can go in and come home all in the same day...


Best of Luck

[Monique]

Since your asking. my son had them out last summer he was 5 1/2. He also had heart surgery and needed to be cleared by cardiologist etc (just one added thing extra that has to be done) We did the tonsils cuz he is on 3rd set of tubes and lots of ear infections still. Also sleep apnea was not diagonesed but i think he definately had issues. So we say okay.

So we were in the hospital for 8 hours. I beggggged them to let us go home. He was so focused on his surroundings he would not eat or drink. I knew he would be okay if we could get him home and luckily they let us and he did. But, his throat hurt so much (even with the painkiller the hospital gave us)he stopped eating and drinking too. So two days later they almost readmit him to the hospital but i was able to make sure he got enough fluids. So it was pretty rough for him for about 5-7 days. They only great thing that happened is that he was still drinking liquids from a bottle (cup issues, low tone and i guess we enabled) but once the surgery happened it was too painful to drink or suck the bottle so from that day on, he has been a cup drinker !!! Who knew. All those years of OT and ST and all i had to do was get his tonsils taken out and voila, he drinks from a cup.

I think its a tuff call. I probably would wait or definatley get a 2nd or 3rd opinion!

Good Luck!
M.

Also, i dont think his sleep conditions are much better and he still gets about 4 ear infections a year. Don't think the tonsils mattered either way.

[madiparkersmom]

Thank you so much for the replies. I know I asked for your stories and I am very thankful for them. I am tough...I wanted to hear any stories...good or bad.

I wanted to add a few more things I thought of while reading the replies.

I am more than happy to stay overnight (or several nights if need be) after surgery. We are no stranger to hospital stays unfortunately and I would rather be under their watchful eye during any crucial time periods. The ENT said it could be 5 days (which I think was his attempt to scare me out of surgery, but 5 days is about average for each time we've been admitted...including heart repair.)

Parker seems to handle anesthesia well. He has been under for heart surgery, 2 hernia repairs, an endoscopy, and eartubes/adenoid removal. I'm not concerned about him having a hard time with anesthesia.

Parker recently had a follow up with cardiology and his heart repair is SO GOOD that she doesn't need to see us back for TWO years! Yeah Parker! She also noted that prophylaxis is not necessary. From a cardiac standpoint everything is great.

The thing that is strange to me is that Parker has been very healthy (since his fundoplication he doesn't have aspiration pneumonia landing his butt in the hospital several times a year) and has ZERO ear infections. My reasons to favor the tonsillectomy is the feeding issues and possible sleep apnea.

On one hand I want the tonsillectomy because we have tried everything under the moon to get him to eat. It almost seems like the obvious thing to do...remove the obstruction and allow him to swallow. It is VERY hard when your kid can't do something that is supposed to come naturally. On the other hand I feel like this doctor is only denying it because I want it. I'm not even sure if I want it 100%. I am very confused.

I research and learn and I ask questions. I ask lots of questions. I am my son's advocate and I will fight for what is best for him. I just don't know what is best right now. And it stinks! I am very curious to hear what this new ENT has to say.

Thanks again! I'll keep checking back if anyone else wants to share.

[Chris too]

Tonya, I'm glad you are getting a second opinion. I'm thinking that therapy is working, and he just needs to get to the next step. That being said, there is evidence (on the Internet) that excessively large tonsils can cause mouth breathing, hypoxia, and difficulty swallowing. I hope that the 2nd opinion ENT will order a new sleep study to see if there is hypoxia.

Best wishes!
Chris too

[victoriasdad]

omg .... what horror stories!!!! victoria was four when she had her adnoids out......... cured her sinus infections right up... no more green buggers and almost no eye weeping........ when she was five we had her tonsils out(due to sleep apnia) her adnoids had grown back so we had them out again too...that was in the morning,,,,,, at four that evening she was eating pizza :othe next day she was eating dorito corn chips.. and i dont mean nibbling on them!!! she never even acted like she had any pain.. but again she doesnt show pain usually.... when i was 42 i had my tonsils out, sever sleep apnia... i would pass out if i laughed too hard from lack of oxygen and i had trouble swallowing, (one thing i did have to do was to learn to drink again , with out my diviated septum and tonsils every time i drank anything it would gush out my nose!!!! ) i was in the icu overnight,, i had my diviated septum fixed , so i had my nose clogged by splints and yucky stuff.. i was sick for ten days , i lost twenty pounds in six days and i seriously wanted to die!!! all in all im glad it was me and not victoria.. and i would do it again,,,it changed my life for me it saved my life...

[Ericsmomma]

Tonya,
Eric had his tonsils and adnoids out when he was 5 1/2 years old. The ENT at Rainbows baby and children's hospital used a new technique...(I can't recall the name of the procedure)
which made for less pain and bleeding. He stayed overnight, and did very well. In fact, the nurses on the floor kept asking "Are you sure he had surgery"? He was eating popsicles in the recovery room. The only pain med he took was tylenol. (I tried to avoid giving him anything stronger because sometimes the pain meds make the stomach upset and they vomit, which isn't good after a T & A). The doctor told us he may have some pain about 5-7 days after surgery, because thats when the "scabs " come off, and the area may be sore.
He even did ok with that...had alittle trouble eating for a few days, but with tylenol he weathered it fine. All in all, it went much better than I thought it would....Good Luck with any decision you make. Also its good to get the second opinion. Let us know how it goes.

[momofrussell]

I'd like to see the high mobidity rate studies.. since lots and lots of ENT's routinely perform T&A's for children w/DS. I am not saying the doc is wrong, just would truly like to see it all.

Your ENT sounds conservative like our Ped Opthamalogist in CA. Russell has severe eye issues and she told us he could have his lens implants by age 5. (He was born with cataracts). Well, we moved to IL and a new doc wouldn't do it, too many issues, could go blind, ect. So I call my old doc and she too said, "I know I told you by age 5 but with Russell's issues and ALL the risks, it doesn't outway the benefits".. My son was already "legally blind" so I found a new, wonderful well know ped opth that semantically looked at my son w/DS and all his spec needs, the way I did.. and we got the implants! As parents, WE were willing to take that risk. It was THAT important for Russell to get those implants.

So... I get the sense that maybe your ENT is looking at it from MUST a medical point of view, and maybe what has already gone on medical for Parker. Some docs are like that. I'd suggest you get another opinion, which is sounds like you are, and go from there. Does your ENT work on a lot of kids w/DS?

Russell JUST had his T&A done the beginning of 2006. He was 8 yrs old at the time and it was LONG over due. Russell's sleep is sooo shody that I truly never thought it was OSA, but Kevin was convinced for years it was. We finally went to the ENT for the 1st time, who is someone our DS Clinic refers to, and from what we told him about Russell and his sleep, and seeing his tonsils, was sure he had OSA... and we skipped the sleep study and went in for the kill. Fine with us! So, they did the T&A and although Russell's sleep is still shody at times, it is nothing like it was. The T&A did a world of good! And after truly learning about OSA and what it CAN do to a child, I am sad I waited so long to take Russell to an ENT!

Our ENT always says a child w/DS stays overnight. So we were good with that. Russell had a very rough first couple days but nothing we couldn't manage. He didn't drink well and hydration is key with a T&A. But my buddy Robin here said SYRINGE!!! And boy, that DID the trick. Even on morphine for 24 hours he wouldn't drink. But after 48 hours and him at home, he was doing pretty good!

Our doc said not to wait until they are showing pain to give them tylenol.. just keep up on it and also gave us a script for codiene. We never needed the codiene but did keep up on the tylenol for about a week to make sure it's easier to keep Russell hydrated and fed.

A.

[Chester]

Our ENT had us prepared to stay over night after JT had a T & A, tubes in his ears and eye ducts probed. JT was a old 3 when he had it done. We were sent home the afternoon of the surgery. He was eating McDonald frech fries for dinner. We tried to get him to stick to soft type foods, but he wanted nothing to do with it.

We did keep up on his pain meds for a few days. We had been warned that the pain could be the worst a few days after. We didn't notice any problems.

Good Luck, with your decision. A second opinion, or third has never hurt anyone.

Dawn

[madiparkersmom]

I agree...when they told me high morbidity rate I about fell over. Dying from a tonsillectomy? I seriously doubt it. Of course, they tell me this when I call to question the decision not to do the procedure. I believe this doc has a problem with parents that question him and he was saying whatever he could to scare me into doing what he wanted. It takes a lot to scare me anymore!

The doc does work a lot with kids with DS. He works at Children's Hospital and came highly recommended by the Down Syndrome Center. His ego seems to be getting in the way though. He did tell me from the very beginning that he is pretty conservative. Being cautious is good but sometimes you have to weigh the risks and benefits.

We do have an advantage by having a feeding tube, where we can still give him fluids and food even if his throat hurts too much to swallow.

Now I really can't wait until Thursday.

Tonya

[momofrussell]

Your ENT reminds me of the 1st ped opth we saw when we moved to IL. This docs ego also got in the way of truly understanding anything we'd try to communicate. We saw him once in his office, had one procedure (EUA) at the hosp and I basically dismissed him of his services post op. He did NOT like that and went around me to my DH thinking he'd get somewhere? LOL He was also a "see I told you so" kinda guy...and I didn't need that... I needed vision for my son!

Keep us posted on the Thurs visit!

A.