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abdualpt

Tonsillectomy and Adenoidectomy?

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My son E., has PANDAS and is almost 6 months status post IVIG treatment. We were advised by the treating Physician that E. should have a tonsillectomy and adenoidectomy at 3 months, but could not find a supportive ENT to do this. We are still looking. Has anyone had their children undergo these procedures for the treatment of PANDAS? If so, what were the outcomes?

Thanks

Edited by abdualpt

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My son had a T&A at the recommendation of Dr L. The tonsils and adenoids can harbor infections. My son's tonsils were enlarged, and he had been complaining of a 'lump' in his throat, and he had difficulty swallowing. He also was on long-term antibiotics and received IVIG two months after the T&A. He had had PANDAS symptoms since he was very little, and he was 12 when he was treated. He is now 14 and so much better. He really is a different kid. 

I don't know where you live; my son's T&A was done at Georgetown in DC by Dr Harvey, who is very knowledgeable about PANDAS. 

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Years ago before we did T&A, I searched this forum for experiences with T&A, and tallied the + and the -.  There were more pluses, but a few hard negatives, that I put down to inadequate abx before and after.  If you are interested, I can attach the spreadsheet where I did the tally (not on the computer I am on right now).

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On 1/26/2018 at 12:24 PM, bobh said:

Years ago before we did T&A, I searched this forum for experiences with T&A, and tallied the + and the -.  There were more pluses, but a few hard negatives, that I put down to inadequate abx before and after.  If you are interested, I can attach the spreadsheet where I did the tally (not on the computer I am on right now).

I’m not the OP, but I’d be very interested in seeing this. Thank you for offering to share. We were just told last week by Dr. L that we should consider a tonsillectomy. But we’re not feeling confident about it because my daughter has only tested positive twice in her life (she’s 5yo) for strep in her throat and twice for perianal strep.  She hasn’t had any positive strep test in 1.5 years, despite ongoing PANDAS flares. Anyway, we’d love any info that could help us make our decision. 

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Sorry that I didn't see your response earlier - and I don't have the spreadsheet from where I am now.  I hope to remember to attach it tonight, when I am at  home.

On "only" 4 positive tests by age 5:  I guess it depends on how many times you swabbed.  But given that false negatives is somewhat high for swabs, it seems to me that 4 positives by age 5 may not be that low.  (I guess it might be if you swabbed dozens of times).

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Ok, here is a spreadsheet attached that includes a brief description of the tonsillectomy experience, and then a link (all but 3 to a thread here at ACN Latitudes) if you want to read more.  (The hardest part of this was actually weeding out duplicate responses in different threads).

tonsillectomy_results.xls

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T&A got done near onset and there was inflammed tonsil and lymph nodes. Post surgery we had a 3 week reprieve and then it was back full force.  In hindsight, I wish we had done the full lyme & co-infections work up first because that ultimately seems to have been the driving culprit (Babesia duncani in particular).

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