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Posts posted by JPdad

  1. For us it took the T&A and daily antibiotics before we got to 100%. We did 10 days of Antibiotics before, IV during, and 10 days after the surgery and he was 100%. Then once his script ran out the tics returned, so he went on Augmentin daily. Since that point he has been 100% for almost 8 full months now. Fingers crossed this cold and flu season passes and he stays where he is now.



  2. I don't want to say anything negative about the guy because he has helped my son very much, but his office is easily the most unprofessional doctors office I have ever encountered or heard of. Beyond not taking insurance, they don't even have a personalized answering machine message. The receptionist (Silky I think she calls herself) is not helpful or professional at all to put it mildly.


    It's just very unprofessional and dissappointing to leave for weeks on end and not have somebody there to cover your practice and refill prescriptions for sick kids.

  3. My son is nearly 4 years old and diagnosed with PANS about 6 months ago. His Neurologist tried Keflex and Zithromax with no change, but Augmentin seems to be our miracle drug. He has been started on Augmentin 4 times in the past 9 months and every single time, within 3-5 days he is 90-95% back to himself. One time he had a relapse after a cold after being on Augmentin for 30+ days so we stopped the Augmentin and he got really bad - HORRIBLE tics. We started it back up after a few weeks and once again he was WAY better within 5 days.


    My question is this - what possible infection could Augmentin be fighting to have worked so well every single time? We have bloodwork testing for Mycoplasma, West Nile, Coxsackie, HHV6, and something else I can't read coming up on September 15th and I am wondering if there is anything else we should test for? Something that Augmentin works against?


    Thank you!



    It could be strep hiding deep in the tonsils or inner ear. Our story is very similar to yours. After the first PANDAS episode caused by strep, we were helped greatly by augmentin. Every time we took him off Augmentin he'd be fine for 3-4 weeks, then would start a new flare and typically was diagnosed with an ear infection. A few days on Augmentin and he was better. Once the 10 day script ran out you could set your watch to it, and the whole flare process would start over in about 3 weeks.


    After over a year of this process we finally convinced the docs to removed tonsils & adenoids, put in ear tubes, and prescribe daily Augmentin. Since that took place (cross fingers) he has been 100% healthy and PANDAS flare free for about 7 months now.

  4. My DS has only ever had strep twice that we know of. The first time was before PANDAS, and he was 3. He had an awful sore throat, high fever, and was miserable for 3 days but had no PANDAS symptoms. The second time he got strep he had no sore throat, fever, or any other symptoms. Instead he developed tics, OCD, and hyperactivity. That was the beginning of his PANS journey.


    I wonder if it is different strains of strep that might be responsible for the PANDAS reaction.

  5. We had no luck with zithromax 3x a week. I guess the theory is that it has a longer half life (60 hours or something) and a single does is supposed to keep you protected for a few days. For whatever reason DS kept getting ear infections and exacerbations. Once we went to daily augmentin he was able to stay infection free.

  6. It sounded like all of the kids got better, even the ones that Dr. T didn't treat which is why the PANS diagnosis wasn't 100%.


    If you watched the show you can draw your own conclusions. I think the older woman was either faking for attention or simply had mental problems. She basically admitted as much. The two girls Dr. T treated for strep and Lyme were most certainly PANS kids. I kinda wonder if some of the other kids were true convergence disorder kids? Maybe the couple of girls actually had exacerbations from an infection, and then a few other kids saw them ticking and stress of their lives made them start ticking too?


    Regardless, it surely is one weird/fascinating case. Dr. T. is a good man for going up their on his own dime to try and help those kids.

  7. Our DS6 with PANS, no lyme, came home from baseball practice today and had a tick stuck in his arm. We followed protocol and tried the cottonball with soap trick which didn't work so ended up getting it out with tweezers. I'm pretty confident that we got the whole tick out because it was crawling around afterwards. We washed the areas and applied antibiotic ointment.


    Our question is now, what to do the prevent lyme. We live in PA, and this was a deer tick. Lyme is pretty common around here. Should we get him on an antibiotic? He takes a proph. dose of Augmentin now. Should we see a doctor?


    Your advice is appreciated.

  8. I've been meaning to note this for a while. I cannot run an actual statistical analysis of the forum but it seems that many of us have joined in January. I don't know what this means exactly.

    My theory is that most kids being born in January, most parents take them to annual physicals during which they get vaccines.

    Second theory has to do with the time of the year which is in the Northern hemisphere the time for most infections.

    third idea is that our kids get their flu vaccines in the fall and it takes a while for parents to find the forum.

    fourth theory is that this is just a coincidence.


    Obviously people dealing with an autoimmune disease like PANDAS would be most vulnerable during cold and flu season, with January being the height of that. I'm sure birth month has nothing to do with it. More people are born in July/August/September than any other months. January is only the 7th most common birth month.

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