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Need help figuring out throat culture/lab results in PANDAS children


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Hi All,

I recently posted about my children and just got the test results. I am very confused about the results and wondered if anyone has input or has experienced any of the same results. To quickly recap our situation, I recently saw a behavior change (irritability, hyperactivity, oppositional behavior, very emotional, crying easily) as well as dark circles under the eyes of my 5 and 7 yr. old boys (not "formally" diagnosed with PANDAS, but based on the similiarity to my diagnosed PANDAS child, I know they are PANDAS also). In addition, my 12 yr. old (PANDAS)had an increase in tics and my 2 yr. old has screamed, cried and thrown fits MUCH more often than normal.

On Oct. 3rd I had the 5 and 7 yr. old cultured, results came back negative. We treated only the 5 aand 7 yr. old with 15 days of Zithromax anyway based on their behaviors and within 5 days no dark circles under eyes, by day 15 behaviors almost completely gone. After about 5 days off of the Zith, the behaviors slowly returned as well as the dark circles. After 12 days on no antibiotics I had my 2, 5, and 7 year old cultured, as well as myself. I also had titers done on my 5 year old who seemed worse off than the others. (MY 12 and 7 yr. old have had their tonsils and adenoids removed and I think my 5 yr. old gets worse behaviors b/c his tonsils are huge and are probably harboring the strep. ) My 2 yr. old also had what looked like a scarlatinaform rash all over his belly. We did not culture my 12 yr. old.

 

My doctor agreed to put the 2,5,7 yr. old on Zithromax that day based on their great previous response to it. I also started my daughter on Zithromax ON MY OWN using extra Zith that I had b/c she most definitely had an increase in tics. Today is day 4 on the Zith, dark circles gone, my daughter's tics greatly reduced, their behaviors are slightly improved, baby's rash completely gone.

I asked them to do a full respiratory culture,not just for strep A. Here are the results:

 

Colleen (the mom) Beta strep, BUT NOT A,C, G, or B

 

7 year old son: routine upper respiratory flora, heavy growth

 

5 year old son: routine respiratory , moderate growth

ASO 106 Anti DNaseB 1:170

 

2 year old: Group B strep (I have been GBS- group beta strep positive with all 4 of my pregnancies and even though I would be treated at 34 weeks with antibiotics, I would test positive again a few weeks after being treated so maybe I am a carrier of GBS??)

 

I am thoroughly confused, don't know what to make of it all. These are the first titers that we have ever done on my son AND he had been on 15 days of Zithromax 12 days prior.

One more piece of info I got today was my 7 yr. old titers that we did in Sept. of 2007 when he had a big increase in PANDAS behaviors. The ASO was 366. To my knowledge, the nurse at the dr's office had reported the titer to me as negative, but is an ASO of 366 negative??

So sorry for such a long post, but I am hoping someone can help me make some sense of this.

Thanks!! Colleen

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