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    Joined: Feb 2009
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    Thanks for the reassuring words, Arminius. If you don't mind my asking...did you give your parents trouble in other ways? Generally defiant and/or stubborn? Or was it just a handwriting issue?

    I'm still not sure if his problem is a pencil grip/handwriting problem that can be eased by teaching him to type. He seems to hate typing just as much. It seems like a psychological fear triggered by the sight of a blank page (or screen)...

    In the mean time, I am despondent over this child. As I feared, it gets a little worse each day...I feel angry at him all the time, but I know I shouldn't, because on a very real level it isn't his fault, so I suppress the anger-- and the result is that I am slipping into a depression and today had a full-blown panic attack.

    You are all describing brilliant children who need acceleration... I have a brilliant child who can hardly get through the day, does shoddy work, and fights a losing battle to control himself.

    It's extra frustrating right now, because I saw something that worked-- a particular antibiotic-- but I could not leave him on it, so I've had to watch this all come back again and again...

    It feels like that story, Flowers for Algernon...

    Horrible.

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    oh hugs bronxmom. I'm so sorry. WHy couldn't you leave him on that antibiotic? Is he not able to clear the strep from his system? He is not getting continually re-infected is he? A friend whose DD developed OCD after going to school, swore it was the water fountains causing the recurrent strep.

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    Apparently, the spectrum of microbes it attacks is too broad. I guess he'll run a huge risk of developing a resistant superinfection later. Obviously I don't want that.

    I just wish they would put a little effort into figuring out just WHAT infection he really does have and whether there's a narrower antibiotic that will work, since it's tearing our household apart.

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    Also, does anyone have any advice for me on how to be more aggressive in getting better medical help for my son?

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    bronxie have you found an internet support group for the Pandas? that is step 1 when is your appointment? i would also like to see you get a daily vent time - phone, blogging, journalling whatever works for you but it must be regular....... love and more lv, grimity


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    http://www.pedrheumonlinejournal.org/April/reviewarti.htm

    this stuff is confusing! Sounds like a very new method for identifying a syndrome, hopefully you will have good luck with getting some better treatment, but I would recommend digging around - doing research on your own.

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    I guess I am just accepting what a long-term thing I'm looking at...thanks for the article...

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    I am not knowledgable in this area at all but I am wondering, is there a way to test for what microbe his is infected with? We test for infections on the skin, in the blood, on mucous membranes and in secretions you think they could figure it out. Someone please enlighten me, I'm sure I am missing something.


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    bronxmom- my son was diagnosed by a pediatric neurologist. He worked with another specialized ped neurologist. His tests were very thorough, since my son had had a gran mal seizure, and they were looking for a pattern for the onset from past ones.

    I don't know if it helps, but at the time, pediatric neurologists were the only ones who could diagnose PANDAS. Maybe if you go to one, they would be more knowledgeable and help more. They also might be available. We have to now go only every six months for follow ups.

    BTW, did you know there is a vaccine they are working on for strep throat? The last I heard it was being tried on a specific sample population. It will keep these guys from prophylactic doses of antibiotics. We hold out hope then that it will be overcome someday.

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    How is your son doing now? Is he taking prophylactic antibiotics? Which one?
    What is the prognosis of PANDAS kids into adulthood?

    I guess I should ask my pediatrician for a referral to a pediatric neurologist. My pediatrician does not seem to understand the agony that I am going through.

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