T&A survey

[mar]

So I have been researching and wondering if T& A surgery would help ds. My question is has anyone who has done this with a pandas child seen improvement? Or those who have done it that have seen nothing helping. A yes or no or anything you want to add. I don't want to put him through this if it doesn't help. Like mother-in- law tells me today no you shouldn't do it b/c he won't have anything to catch his infections. He needs his tonsils. She thinks I am nuts for thinking about it.

Mar

[LNN]

T&A was a great help to my DS. That's where his chronic infection was. He saw great improvements in the months following. However, it was not the end of our journey. I'd do it again, but would never suggest it's the last step you'll ever have to take.

[ptcgirl]

My DD had hers removed and was 100% symptom free without any meds at all (unfortunately including abx) for a full 9 months. It was like she woke up without PANDAS anymore. Crazy. I wish she had stayed on a low dose abx so that she would not have gotten reinfected after those 9 months. It all came rushing back and now she's doing ivigs. I would absolutely recommend removing but keep a low dose of abx so reinfection doesn't come back. Good luck!!!

[airial95]

I ditto ptcgirl. We were 100% symptom free post T&A. Unfortunately ours only lasted about 6 weeks before he was reinfected. But it was the first time in over 2 years he was better. And even though it was short lived, I wouldnt hesitate to do it again. Our sucess was so significant that we got our pandas daughters tonsils out 2 weeks after our son.

[Kiera]

T & A didn't help with symptoms but so glad they're out as they were scarred and infected, even though looked normal. So I'm sure they were contributing to the ongoing autoimmune reaction and we've eliminated one more hidden source of infection.

[hugs2day]

My ds7 had T&A at age 5 after 9 months of chronic strep and he couldn't breathe or eat anymore. He enjoyed 6 weeks of no antibiotics and feeling great and then had overnight onset of the worst pandas symptoms listed on Dr. K's website. It was awful.

 

They are a source of infection just make sure he has abx on board before during and after do not give up the antibiotics. like LLM stated the T&A is unfortunately not the end of the road.

 

On the flipside of that experience with my younger son is my older ds9 he still has tonsils and is in remission with abx alone.

 

Its a tricky sneaky disease... I cannot make sense of it.

 

Good luck and best wishes whatever you decide.