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can we talk (again) about why ASO doesn't rise in some kids with c


eljomom

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I know it's been addressed before, but I never really paid much attention to the fact that some kids with confirmed strep do not get rise in ASO. This is because we never had confirmed strep. Maybe because we never tested but once, which was months after this started, and was negative. Also, when we finally got her titers run after months of symptoms, her ASO was 6. And we were told it was great because this meant it was NOT pandas.

 

So I've learned that yes, indeed it still can be pandas, or pitand, or whatever, with low titers. I ASSumed that we were pitand due to the low titers, etc. My dd had confirmed strep on a rapid about a month ago. Her symptoms (mostly tics, some ocd.....) have NOT REMITTED since beginning. Mild ocd was about 3 years ago (can't remember, b/c i wasn't thinking it was anything but a phase), then tics last spring....just a few...again, thinking a phase. Then the big one, after the fever, with over a dozen tics, ocd, separation anxiety, etc....Since then (last July), tics have not gone away, still mild ocd. So about 5 weeks ago, one of dd's sisters started ticcing a little, which she has done over the years off an on. Then dd (pandas) tics became NONSTOP. DH told me to get a swab, which I almost didn't do, b/c I thought we were PITAND> Low and behold, it was positive.

 

Saw our pandas doc, who didn't think it was worth running titers. Wants tonsils out. That's another story. Saw the Georgetown ENT who pandas doc refers patients to. HE said some kids do better, but it's not a "cure" and some don't do better at all. I have heard from some who have done worse. But I did talk to ENT about running titers to see if she had a rise, to see if she even GETS a rise. He said it was a good idea. Just got the call that her antiDNAse B was not in yet, but the ASO was 6. Same exact number. She had strep 3 weeks prior to the blood test. Also, ENT did a scope and said her tonsils do not look large at all....1 on a scale of 1-4.

 

So, wondering, I have read that ASO might not rise if kids are on antibiotics, which she still is. Also, the ENT said it means dd does not mount an immune response to strep. I guess this means she does not fight it??? But what does it mean immunologically? Do kids who don't have ASO rise tend to do better with IVIG? Really curious about all this. It simply MUST mean something, in my opinion.

Edited by eljomom
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Has your daughter been checked by an immunologist for immune deficiencies? Children with immune deficiencies may not mount ASOs because they do not make enough antibodies to show up on the test. I would assume that any PANDAS doc would have run an immune status panel with total IgG, IgA, IgM, and subtypes. If not, find an immunologist (who is knowledgable about PANDAS if you can get to one) and have a full immune workup.

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I can't give you answers to your questions, because they're the same questions I plague myself with as well. On Monday, we've just had our 8th postive swab in 20 months (not to mention the impteigo and nasal strep infections he's had...but that's another post.)

 

He has NEVER had an elevated titre (on abx or not, postive swab and all), and he's had 3 full immune panels done and shows no deficiencies of any kind. But yet, we are textbook PANDAS.

 

We're seeing immunology in a couple of weeks, and our pediatrician just pulled the trigger on wanting to get the tonsils out, his are very large. We all agreed to wait and see what immunology says and then make that decision.

 

Dr Murphy told us the same thing you heard about the tonsils - it helps some kids, makes no difference in others. She doesn't recommend it just based on PANDAS alone, unless you have other reasons to consider it. My son just met that "magic number" of infections I guess to make it worth considering.

 

Sorry I couldn't answer your questions, but thought you'd like to know that you're not the only one out there dealing with these challenges.

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My DS has never had a titer rise. He's also never had a positive throat culture. He's had the immune panel ran...twice. Normal both times. He does have a reaction of symptoms escalating when he's had a known strep exposure. He had two this summer. We upped the abx and things settled down. Dr K says he has about 100 patients just like DS. Colds and stomach viruses's have not affected DS. We think he's PANDAS.

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