asatwice

i would love to contribute my son's story to this project--please add me to your list! (sorry if this is a duplicate post--my first response seems to have disappeared.)

hi all--there is a new support group for parents of PANDAS kids meeting for the first time tonight in iowa city, iowa. we are meeting at the java house on mormon trek at 7:00 pm. please come and meet other parents--we all have experiences to share. i will be sitting at a table with a stuffed panda on it (sorry). please email me through the forum if you have any questions, and i look forward to meeting you all tonight. missy allen

thank you--i will start there!

my son has the funky hand movement thing, too. it was at its worst when the PANDAS first blossomed and took over his world three years ago; now it comes back in a less-intense form. but, it is one of the signs we look for to see if he is having problems. as an aside, we have given up on strep tests--in our experience, our son can have a recurrence of symptoms if his immune system is taxed from even a cold or the flu--we haven't found it to be limited to strep infection, except for the initial onset (scarlet fever, asymptomatic strep for months). just a thought. good luck to you.

we are in the middle of a recurrence as well. yesterday i feel like all i did was yell "stop it! what are you doing? look at my face--don't do that!" about a thousand times, and i feel like just about the worst parent in the world today...the only saving grace was that my husband had the day off and was actually here to see it--his schedule usually doesn't permit that. we tried TV, which failed yesterday; today we are trying video games (something we don't normally do) and sledding. also, we started him on a course of antibiotics last night (husband is a medical scientist)--we have given up completely on getting strep tests at this point. i'm so sorry that you're suffering right now, but please know that you are not alone.

has anyone had any success finding PANDAS help in iowa?