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Posting about personal things is not too much of my thing. I post when I think I have something to contribute but I need help.


I've been reading around this forum since 07 when my then 4 yo dd had a sudden onset of tics, eye blinking and shoulder shrugging at a time when her brother had strep. She wasn't tested because she did not have classic symptoms but was sick with what we thought was a cold and long cough. Doc did ASO when we went in and lyme elisa. ASO was 200, not considered positive for our doctor at time. Found very basic PANDAS info online at the time and suspected it. We went in after all the time for swabs and 2 weeks later she was positive, treated with augmentin 10 days, tics remained, maybe a little less, then 2 weeks later tested positive, I asked for zith, got 5 days and started Bontech vitamins at same time. About a week later all tics went away. We attributed it to vitamins because doctors kept telling us PANDAS was rare and I should stop reading the internet.


Before and after this time there was separation anxiety (at times very extreme), frequent urination, oppositional behavior, moodiness but it always passed or was what we thought just being a difficult child at times. We kept suspecting PANDAS and always made sure dd was treated for proven strep. She was usually symptomatic for it, treated and did just fine. Recently she has been really good for over two years, with some minimal stuff that came and went on its own or during a time of abx.


Fast forward to now and she had developed a bad tic out of nowhere. Our doctor gave us zith right away at onset and ran titers which were neg for strep. The zith brought her back to 90 to 95% right away. I have consulted with a PANDAS expert and found her to be positive for myco p (no symptoms except for tic), probably explaining why she responded so well to the zith.


But she is slipping now and doing it more. Classmates and parents are beginning to notice. She is also really moody, crying, angry on and off. One recommendation has been to add in augmentin for 3 weeks in case she was exposed to strep (there has been alot in her class). I am also wondering about the option of increasing the dose of zith to see if that helps. She is already on the strep dose for her weight, which is 300mg. But I see on here that many are on as high as 500 mg for little ones. I wonder for those on zith if increasing it alone has helped. I really dread the thought of two antibiotics for her tummy and the schedule of trying to fit in probiotics.


So, what would you do? Is this what can happen when an ab stops working or could it be just exposure to something else? This high dose should be keeping the strep away.


Myco p really sounds like a nasty bug with no cell wall etc. Not that strep is any picnic I know. It has proven, no controversy neurological complications.




Strep really needs this type of published research. If it's there, I haven't found it.




Mom Love

Edited by mom love
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My daughter had a sudden onset of tics,she went from about 3 mild ones to over a dozen now. Looking at her records i just picked up, she had walking pneumonia (myco p. was in "?" on her chart) this spring, probably right around when first tics started. In june, high fever, and within a week, the dozen tics, that are still going strong now 4 months later. ASO was negative, and it took 2 docs to even just get one to run that.

Would you mind telling me what pandas expert you were with that told you about myco. p.?? I am wondering if it's Dr. T, as he seems to have a special interest in that. I'm considering consulting with him, but also don't want to "force" my daughter into a pandas diagnosis.

I am sorry about your daughter and her tics--but I can totally relate. I see people stare at her at the store. Four months ago, people stared at her because she's so stinking cute, and now they stare because of her tics.

Thanks for sharing.

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