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After meeting with docs today, I am conflicted about what to do. The ENT recommended a tonsillectomy based on our DS' history, his examination, the autoimmune component, and his age (14). He has seen very good results in some PANDAS patients. Emphasis on some. The longer the autoimmune process has been going on, the less likely to see great results.

 

Our history includes Lyme/Bartonella, not just strep. That being said, any strep infection put him "over the edge." DS does respond well to steroids and IVIg as well as Augmenting/Zith and some other abx.

 

We have a meeting on Sept 4 to go over the input from the neurologist, immunologist, and the ENT. So, I have until the 4th to make up my mind. Husband says "Do it, or you will always wonder..."

 

I would love to hear other people's experiences with tonsillectomy/pandas.

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My son was much younger at the time we did tonsillectomy (4) but he already had a well documented strep history (10+ infections/year for 2 years). When we did the T&A, we were hoping it would not only help the PANDAS, but reduce the chronic strep. Our ENT, pediatrician, neuro and PANDAS doc were all on board. We kept him on abx prior to surgery, did IV abx during the surgery and then switched to augmentin post-op (a switch we were planning a few weeks prior to surgery but decided to wait). Within 24 hours of the surgery, my son was 100% for the first time in 2 1/2 years. No tics, no OCD - nothing. He was pleasant and happy. Even casual acquaintances noticed the difference in him. It was miraculous. So much so - that 2 weeks later we were in having my daughter's done (she had just been dx PANDAS 3 months prior).

 

Unfortunately, the improvement was short lived. He got strep again 6 weeks post op. The surgery did reduce the number of strep infections by about 40%, and the severity of the flares have decreased since the surgery. My daughter also continued to get strep post-op, but she had always been a mild case recovering within 30 days on abx.

 

Would I do it again? In a heartbeat. Because like your husband said, if I didn't, I would never know. For us it was another piece of the puzzle that eventually led us to IVIG for my son (who is doing well now). It did help - but it wasn't the miracle cure we were all hoping for.

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cobbie....

 

We are in the same boat. The tonsillectomy idea has come up twice for us in the last 2 months - and this is after treating aggressively for Lyme, co-infections, yeast, viruses, etc. for 2.5 years. The integrative dentist we saw last week did ART and found strep. This just confirmed the bloodwork that always shows elevated ASO and Anti Dnase-B. The dentist also asked me if he still has his tonsils - at the same time that he was looking down my son's throat! He is the 2nd doc that said you can hardly see the tonsils. Theory is that they are pitted from chronic infections and probably necrotized.

 

Not sure what to do. We have plenty of supports on board if we move forward with the surgery - my DS16 has a central IV line and is always on abx plus we give him IV nutrition on days that he can't eat (due to chronic GI issues), so he could give the throat a rest during recovery. But I know it can be a rough surgery for teens and adults.

 

Have you made a decision yet?

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My son was already scheduled for a T&A when he had his first bout with PANDAS. Although he still has flares, he has not had strep once since his surgery. The recovery for him wasn't even that bad. I would make sure he is on ABX afterwards though. The ENT wouldn't give my son ABX and, within a week, we were at the office for a sinus infection.

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cobbie....

 

We are in the same boat. The tonsillectomy idea has come up twice for us in the last 2 months - and this is after treating aggressively for Lyme, co-infections, yeast, viruses, etc. for 2.5 years. The integrative dentist we saw last week did ART and found strep. This just confirmed the bloodwork that always shows elevated ASO and Anti Dnase-B. The dentist also asked me if he still has his tonsils - at the same time that he was looking down my son's throat! He is the 2nd doc that said you can hardly see the tonsils. Theory is that they are pitted from chronic infections and probably necrotized.

 

Not sure what to do. We have plenty of supports on board if we move forward with the surgery - my DS16 has a central IV line and is always on abx plus we give him IV nutrition on days that he can't eat (due to chronic GI issues), so he could give the throat a rest during recovery. But I know it can be a rough surgery for teens and adults.

 

Have you made a decision yet?

I think we are going to do it.

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My DS13 was 12 when he had the T&A. His is also a complex case, but we couldn't rid the Strep so we had him do it. It was rough, and he still had strep after he recovered, but after 6 weeks of Clinda following he hasn't gotten Strep since. He's not healed, his is tic based and it's a slow ship to turn.

But I would definately have him do it again, no questions. Wishing him an easy procedure and a speedy recovery if you go forward.

Erin

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We did both kids at once....older one had been diagnosed with Pandas and Sydenham's.

 

Chorea/tics started again about 2 days after stopping abx post surgery. Ultimately, we did PEX, which worked quite well for her.

 

In the long run it helped though.

 

Just make sure you continue abx, before and after surgery. I've also heard some people use prednisone afterward too.

 

And just because the tonsils look normal doesn't mean they look that way when they come out.

Hers looked ok, but when they were removed, the surgeon said they were just oozing pus and were the most disgusting things he'd ever seen.

Edited by oivay
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