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Removal of tonsils and adenoids


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Went to allergist 2 weeks ago, he didn't believe in PANDAS :huh: but he did say I should take son to ENT to take a look at his tonsills.

 

Went to ENT today, he knew of PANDAS and said it is best for PANDAS kids to have tonsils and adenoids taken out to help reduce infection. AND he had time in his surgery schedule on Friday! I still feel hesitant about this. I just don't like the idea of doing unnecessary surgery. He kept saying that was wrong, it is prophylactic and I get that but prophylactic abx is one thing, surgery is another. Also as some may remember my son has had possible allergic reactions to multiple abx therefore he is undergoing allergy testing but we won't have an answer until at least the end of July. DS has not been allowed to be on abx since March!

 

I think I just need reassurance that it is worth it to do surgery. Is this really going to help him?

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BTW his tonsils and throat looked fine today. Also DS10 is doing lots of I told you so's since he has been asking for this surgery since he felt one would help reduce his chances of strep. lol Maybe someday he will grow up to do research about PANDAS.

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My son had extensive allergies and /ENT problems. We struggled for 7 years with chronic sinus infections and PANDAS symptoms every time he came off high dose antibiotics - before taking his tonsils out. Once the tonsils were out at age 7, the PANDAS symptoms decreased dramatically, as did his sinusitis. We believe he was harboring bacteria in his tonsils.

 

He did great for several years after the Tonsillectomy (adenoids were removed at 18 months). I think that is common with PANDAS - from what I have read - a Tonsillectomy seems to buy you a few good years (if that is the underlying cause of infection), then a return of symptoms (probably due to another type of infection).

 

That said - I would not rush into a T&A. I would not rush into any elective surgery without thinking it through and being comfortable with it. Do you feel comfortable with this? Has there been throat infections to warrant this? Other ENT problems?

 

It seems that the T&A could be done at some other point this summer if / when you are comfortable with it.

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Went to allergist 2 weeks ago, he didn't believe in PANDAS :huh: but he did say I should take son to ENT to take a look at his tonsills.

 

Went to ENT today, he knew of PANDAS and said it is best for PANDAS kids to have tonsils and adenoids taken out to help reduce infection. AND he had time in his surgery schedule on Friday! I still feel hesitant about this. I just don't like the idea of doing unnecessary surgery. He kept saying that was wrong, it is prophylactic and I get that but prophylactic abx is one thing, surgery is another. Also as some may remember my son has had possible allergic reactions to multiple abx therefore he is undergoing allergy testing but we won't have an answer until at least the end of July. DS has not been allowed to be on abx since March!

 

I think I just need reassurance that it is worth it to do surgery. Is this really going to help him?

 

Hard one...we saw an improvement of tics for sure after T&A, but OCD along with behavior issues, and loss of fine motor skills. He is significantly better than last year though when he was getting all the strep throat infections so that has helped with that.

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You sound like you are not comfortable with this. I'd reschedule for later, to give you some time to find out more info, and maybe resolve the allergy situation better.

 

Is your son in exacerbation? I definitely would not do T&A during exacerbation....well, I wouldn't if I had it to do all over again! Despite being on omnicef for a month prior and amoxicillan for 14 days after T&A, my daughter got much, much worse after. We were doing it for prophylaxis as well, and my daughter continued to test positive for strep whenever she wasn't on abx. She does seem to have less sinus problems, though. Some people have had really good results from T&A, so I just think you need to proceed cautiously and get as much info as you can before deciding.

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Is your son in exacerbation? I definitely would not do T&A during exacerbation....well, I wouldn't if I had it to do all over again! Despite being on omnicef for a month prior and amoxicillan for 14 days after T&A, my daughter got much, much worse after. We were doing it for prophylaxis as well, and my daughter continued to test positive for strep whenever she wasn't on abx. She does seem to have less sinus problems, though. Some people have had really good results from T&A, so I just think you need to proceed cautiously and get as much info as you can before deciding.

 

We had exactly the opposite experience. We did the T&A during an exacerbation and afterward, DS started to finally heal and the PANDAS symptoms lessened. (BTW - his tonsils looked ok - it was his adenoids that were enlarged, which you can't tell until after they're out). So I guess it depends on where the infection is residing. I worried about surgery, but I worried about continued Pandas symptoms even more.

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We didn't really have any long-lasting improvement on the pandas end due to removal but my son has been much healthier as far as colds, sinuses since then. The year his exacerbation started which led us to pandas, he had had constant sinus problems, and sore throats. I figured it was one step towards improving, and kind of laid the groundwork for giving his immune system a shot at healing. And I agree with LLM, pandas was taking way more from our lives than surgery!! Not to mention, Dr. L gives a very convincing speech on their uselessness!! Don't let the doctor rush you though, make sure you are comfortable!! Oh and Dr. L also stressed, make sure they get the adenoids too, no point going in unless they get both!! Good Luck!! The constant decision-making caused by pandas is horrible isn't it?

Sarah

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I'm getting my son's out on Friday. He has never even had a sore throat. He has had many positive cultures. I just decided better to do it now than to look back and wish I did. It's an easier recovery now to than if we decided to later.

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I'm getting my son's out on Friday. He has never even had a sore throat. He has had many positive cultures. I just decided better to do it now than to look back and wish I did. It's an easier recovery now to than if we decided to later.

 

 

Good Luck!!

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Thank you! We went through it with my daughter (she is my hopefully non pandas child who was getting strep a LOT with classic sore throat/fever symptoms and had chronic tummyaches... and behaviors that I was getting a bit concerned about just because I know too much about pandas now.) and she had a quick easy recovery... ate chicken nuggets for dinner the same day she had the surgery... and hasn't had her chronic tummyaches since! I hope hope hope that it goes even just half as smoothly as it did for my daughter. My son is a different personality and I know it won't go quite as smooth though.. it helps that he saw her go through it quick and easy. He wants ice pops!

I am anxious to see what the dr. says about his adenoids in the end... I have always been told by doctors that he "looks like an allergy kid" because of his dark circles under his eyes... I was then told by someone that could be connected to the adenoids.... the ENT didn't really say one way or another when I took him for a consult. He is not a kid who gets sick a lot.... (well unless you count Pandas symptoms which obviously count but I mean other illnesses).

It was an easier decision to do it on my daughter because of the constant sore throats and deep down I believed it was related to her tummyaches. They had suggested I do hers before my son's because maybe she was the one giving it to him so much.. but the problem of not really knowing when he has it because he doesn't get the classic symptoms was starting to make me crazy. I totally know they can still get strep although my pediatrician told me with my daughter that she figures she will hardly see me now..I hope she's right.... so far since March, no strep despite my being crazy and having her checked 2 times for it.

 

 

Interestingly enough, my peds wh admit to not knowing much about pandas told me that they think it's a smart move. One dr. there told me that as a dr. she doesn't know the answer as to if I should or shouldn't for my son (she definitely thought it I needed to with my daughter) but that as a mother not just a doctor she would do it if it was her son because she felt that if there was anything that she thought might help her child she would do it.

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Thank you to everyone for your input. I think what had my head spinning last night was to have a.)a doctor who didn't need me to educate him on PANDAS and b.) recommended treatment to help him. Sad that I have come to expect so little from doctors and instead feel I need to go into battle with each new person.

But many of you have helped me see it a different way too--- DS has never been the sick kid in my house, my younger one? Geez he has had it all and used to spend from Oct. to April with one infection after another, snoring, always tired so for him I took him to the ENT seeking the tonsillectomy. DS with PANDAS has had none of that UNTIL this school year since the PANDAS. He is always sick with one thing or another and as someone else described I keep being told he "looks like an allergy kid" He has allergic shiners, has had sinus trouble, etc.

 

Younger (non-PANDAS) DS had a super easy recovery when he had his done a few years ago so I too am hoping that will hold true for his brother. I'm good with the decision today and if it will help reduce things even as we struggle with his inability to have abx I think it is worth it.

 

Am I going to call his ped. or specialist to discuss it with them? No, I honestly don't feel like the potential arguments so I'm making it easy on myself and will tell them when he is all done. :lol:

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I can't say I've researched this much, but I do want to add some food for thought.

 

My DS had sleep apnea and eventually progressed to "glue ear". No, we apparently don't get ANY run of the mill illnesses here :angry: But he had to have T&A along with ear tubes at 3 and a half to remedy this. This was 2 years pre-pandas for us. So it didn't seem to help much for him :lol:

 

I also question this theory bc despite not having tonsils, wouldn't the strep just be able to sit "in the throat" so to speak without tonsils anyway? DS has had positive throat cultures since having his tonsils out. He just didn't have symptoms of a sore throat to go on.

 

I actually fear removing the tonsils makes it easier to mask.

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