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I just went to a PANDAS parents meeting and there was some discussion on tonsillectomies.

So, my question is, have you ever done them without any signs of strep, rapid or culutre? Or with no elevations in ASO or DnaseB?


I just realized in My kids lab work, that Dr. B tested my son for the 14 serotypes for streptococcus pneumonaie, but my DD, who was the original PANDAS was never tested. I'm guessing he meant to but never did.

How do I read my sons results?

Here are his:


S1. 0.4

S3. 0.3

S4. 0.7

S4. 0.5

S8. <0.3

S9 (9N). 0.6

S12 (12F). <0.3

S14. 1.4

S19 (19F). 0.4

S23 (23F). 0.6

S26 (6B). 2.1

S51 (7F). 1.5

S56 (18C). <0.3

S68 (9V). 9.3

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Yes! We took younger sons tonsils and adenoids out strictly for PANDAS/strep reduction. This was last year....4 years after PANDAS onset. By then, he had no signs of strep, hadn't had strep in years, and titers were well in normal range. The ENT said, on office examination, that his tonsils "looked good." Small, not infected, no recurrent strep....no real basis for the removal but he did it for us anyway based on what I told him. (great doc :wub: ) Much to our surprise, after removal, doc came in to recovery room and told us his tonsils were "very infected with pus in areas." I had to pick my jaw up off the floor. Since then, he has made nothing but gains. I wonder if it is due to mere time, staying strep free, removing those tonsils.......or a combo of it all. But I will say in the 4 years leading up to the surgery, he had symptoms (low level) that just would not clear and he reacted to all illnesses he got. (and exposure) He now does not react and his low level, stubborn symptoms have vanished. Either way, I am soooo glad those things are gone!!


By the way....your sons s. pneumonia titers look pretty good!

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My ds's trigger is strep, however he hasn't had a pos culture since initial flare up but reacts to being around it. Finally had "normal looking" Ts and As removed this year purly for pandas symptoms and yes, they were scarred from chronic infection and cultured pos for pseudomonas, both T and A. Strep titers had actually normalized by the time t and a was done! So the lesson is you never know what's in there until you pull them! Does it say on your s. pneumonae lab sheet at the end the protected range. Mine says need to be above 2.0, in which case your son would have failed all but 2 ??

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Thanks for the responses. I will have a chat with Dr. B when we see him next month to see what he recommends.

I have no idea what to make of the above numbers! I have looked up s. Pneumoniae and can't tell if my sons numbers are good/ bad. Protected or not?

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That is the thing. Some articles state .5 as protective...others go all the way up to 2.0 If you research it, you will find they really don't know. Many kids, for whatever reason, just don't "take" to the vaccine well. Failure of the vaccine or the child? I don't think they know that either. I just recently read an article stating how children generally have low titers to this and as they age...their numbers significantly increase. it can just be a matter of time or immune maturity. Remember, this vaccine did not exist when we were kids....just came about in the late 1990's...I think around 1999. So, very understudied vaccine....not much history to go on. Heck...we faired well without it...right? Nobody checked out titers to it.....I wonder how many of us would have "failed?" Anyway, my son(s) numbers look similiar to yours and several immunologists consider their response adequate. Most importatnly, they do not get sick often....I think the clinical picture is more telling than the titers. Funny thing is...their highest titers, 5.0 and up, were to strains they were not vaccinated to. They got the strain/illness naturally and mounted a more than adequate response...that is very telling of their immune systems. They naturally work well....maybe not so well artificially induced. Same with Pertussis....no immunity from the vaccine (fully immunized) but, mounted a great, natural response on their own when they contracted the illness.....titers went from none to quite high.

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I agree with all that P mom said about the titers and the actual health implications. However, I do believe it has a practical significance, if indeed the levels fall below the lab suggested levels of protection, then it gives the Dr more ammo to get IVIG covered, if it's put together with maybe some other abnormal labs then specific immune def. or immune dysfunction codes can be used. Just another way around "policy does not cover IVIG for Pandas".

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I am new to this board, and my son was diagnosed with PANS (PANDAS) last November. He responds well to antibiotics, but he is having more symptoms recently. Our doc is going to take out his tonsils. She said that 100% of her patients she has referred to with PANS to a doctor in Georgetown to remove their tonsils, after testing the tonsils, came back positive for strep and staph infections. So, since my son's are HUGE and one is larger than the other, we're doing it. I hope to post positive results soon after it's done. :)

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We are having my son's out on June 21. He is 17 and in a good place after years of battle, so I'm nervous to mess with things. But I just want to get them out as a protective measure for his future. Two IVIG's, a year of Augmentin, all with major gains, but still not himself. Now doing very well - His most recent gains were after a course of clindomycin for elevated mycoplasma titers, prescribed by dr. T. The ENT doesn't see a reason to do it, but is ok with it based on our story and the papers I took him.

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