Deciding on tonsillectomy - really need advice

[JSL25]

My daughter, age 5, has not been able to find any relief from her PANDAS symptoms which began at age 3.5 with a strep infection. That first flare was her 2nd strep throat infection of her life, and in addition to that, she had two perianal strep infections at the age of 1 and 2. So a grand total of 4 strep infections in her 5 years. Since that initial onset at 3.5yo, she has NOT tested positive for strep again, despite many swabs/cultures. However, her PANDAS symptoms have been waxing and waning since then. 

Dr. L has suggested a tonsillectomy and we found a local ENT willing to do it. It’s now up to my husband and me to decide if we want to subject our daughter to the risks of anesthesia and surgery even though she really has not had that many strep infections, and hasn’t had one in 1.5 years. This is proving to be a very difficult decision for us. We are desperate to help her find relief from this nightmare illness, but I’m just not convinced it will help. She is in the worst flare yet right now and there has been no strep preceding this one. Steroids and antibiotics aren’t helping.

Any words of advice? Thank you. 

[WorriedMom1]

There are at least two published reports showing a correlation in tonsillectomy and reduction in OCD symptoms.  In our own daughter's case, I wish we had gone the tonsillectomy route sooner.  She had severe and sudden onset of PANS at age 7.  She would improve greatly with Solumedrol IV, but flare again with each infection.  Each flare got much worse than the one before.  She has never been strep positive, but her blood work showed signs of chronic infection.  This past summer, when she was 10, our clinic said that we need to have her tonsils out pursuing further options.  At that point, she was having 6-8 hours of OCD routines per day and did not get to bed until after midnight because of the complexity of her routines.  Her tonsils were removed, and virtually all of her PANS and OCD symptoms remitted.  She returned to school and had an amazing three months.  She did have another flare this winter when she got a cold/sinus infection, but it was much, much less worse than prior flares, and we were able to get her back to near baseline with only a 5 day prednisone burst.  As for the pathology of her tonsils?  It showed that she had MRSA in her tonsils -- methycillin resistant staph aureas.  Her doctors believe it was the hidden infection that was causing all of her recurring flares.  And none of the antibiotics she was on or had tried (amoxicillin and azithromycin) could ever have reached it.  Let me know if you would like to talk further via private message.  

[Sirena]

We did t&a recd by Dr L with ds at age 6. Gave us three weeks of relief and then an upper respiratory infection put us right back in the flare zone. Eventually we did igenex lyme work up for tick born infections and that treatment is what has gotten us traction. (And he did have strep at onset too). So in hindsight I wish we had done a full panel of tests for Lyme (Dr L doesn’t typically) before tonsillectomy but they may have needed to go anyway.

[bobh]

I have collected answers to the question "does tonsillectomy help" from this forum, and found that most people have reported yes. Those fewer that had very negative experiences tended to be not be on abx before and/or after.

[LYMEpandasocd]

My DDs pediatrician recommended a tonsillectomy when she was ten, it didn't get done until five years later. I was told they were some of the worst tonsils they ever saw. She wasn't given abx before or after and caught strep several times after, that being said I think she would be in a better state currently if we had gotten it done when it was recommended by an experienced doctor. I would highly suggest doing the surgery! My DD recovered in under a month and it had some long term benefits