rita

thank you, tenacity... you are right. we have been thru our exacerbations as you have.. and yes, as a temporary relief, steroids have worked quickly to ease the inflammation until the ivig can be done.. if done for short periods and carefully, they are safe.

we have seen dr trifiletti.. none of the others.. and he is extremely bright and open-minded.

]we've used zithromax at both 250 mg a day, and at times as high as 400-500 mg. probiotic is essential. zithromax has many effects -- anti-microbial, antiinflammatory, pro-motility (crucial for these kids whose g.i. motility is impaired due to basal ganglia damage from pandas),and at times it almost seems "calming" but i dont know the mechanism. generally easier on stomach than augmentin. zithromax is used at 400 mg a day longterm for a gastroparesis group in ohio (can find out which one) and reportedly is well tolerated.

new to group. my son is 10, and got severe pandas after strep - has anyone seen severe "rage" attacks? finally improving with tonsillectomy and ivig, but whenver we take him off zithro, he does worse. who is dr k? tel no? thanks rita

DEar Jasminky I am new to this site. My son is 10, and since getting strep in september is a different kid. he is finally on ivig which helps somewhat so far.. he's only gotten 2 treatments.. so when he does get strep his symptoms are milder and shorter. eventually, the ivig treatments should prevent the immune response to the strep, and i've also considered tonsillectomy. but it does seem that you cant predict how a kid's immune system will respond to ANY antigen - vaccine, a virus, a food, etc.. so the key is to modulate the immune system. i'm still just learning myself, since my son has missed school and has not yet returned to his previous level of function. Rita.