kmom

DebC--I am located in suburb north of Philly. Other mom working with me is located 40 min. south of me and others who have shown interest are scattered around greater Phila. area so we're trying to meet @ a central location of which I don't have a contact for a meeting place but I'll take those ideas of a church or library and run with it! Thanks! ajcire--Dr. T isn't that close. Takes us a little over 2 hrs. to travel to his office but he was so excited to hear about the support groups popping up that he offered us literature and any help we needed. He's so dedicated to the PANDAS cause. He also suggested Dr. Elia as an additional speaker. She first diagnosed my DD and is right here in Philly. Also have seen a fantastic behavior therapist, Dr. Chansky, here in Philly who has help a lot on the behavior end of things and really did a great job explaining OCD/Tics/PANDAS to my DD. My DD credits her with all her success thus far b/c she doesn't understand @ age 8 that it was a mix of behavior modification tools Dr. Chansky gave us and the prescribed meds Dr. T. gave us that has gotten her to about 85-90% better after a severe and sudden onset. Dr. Chansky was my guardian angel that Sat. I realized it was probably PANDAS. After learning about her on this forum, I plugged my contact info into her website. My DD was displaying new symptoms by the hour and I felt desperate. She was so kind and emailed me back a few hours later from a graduation in NY and said, "Sounds like classic PANDAS case. Need abx ASAP! This is VERY scary but VERY treatable". She got me thru that 1st really bad weekend. And she saw us a few days later and I believe nudged Dr. E to fit us in @ CHOP the day before therapy appt. I too had emailed Dr. E. that weekend but think Dr. Chansky helped expedite an appt. When I thanked Dr. Chansky at our appt., she said she has a special spot in her heart for PANDAS families b/c you can have this happy easy going child and suddenly your life flips upside down which is exactly our situation. She and Dr. E. also mentioned that something happened with strep this year b/c they are overloaded. They have never seen such a high amt. of documented cases. Thanks for the help! I'll gladly take any other support group advice!

Asking those of you who have already started a support group to give me any tips/ideas that helped launch your group off the ground. Another mom and I know of some families who are interested in a local support group and Dr. T. has already offered to be a guest speaker and help in any way he can. He was very excited. Any tips on where to host it? Anyone had any luck finding a free facility in their city? Looking for any info that can help us. Thanks in advance!!!

My DD first saw Dr. E and she diagnosed her with PANDAS. She's lovely but didn't clue me in enough on the science/medical end and I wanted that. Plus she kept her on Pen VK which pediatrician started her on day before CHOP appt. Things got better for a few days and then drastically worse. A week later emailed and called Dr. T. and he was great! He wanted to see her ASAP--felt Dr. E's dx was spot on but abx not agressive enough. He said DD had a "severe textbook case caught early" but Pen VK wasn't going to cut it. He switched her to Biaxin (broad spectrum till we knew the exact cause) and added ibuprofen to her daily med dose. He was very willing to explain and talk. I loved the fact that he had my DD and rest of our family do blood work...strep titers, Mycoplasma and Lymes. Her history screamed strep issues (3 bouts of persistent strep throat in a row...literally on abx for 10 days and she'd have a positive strep culture within 3 days off abx) but Dr. T. wanted to rule out MycoP and Lymes b/c there are cases where kids can test positive for more than one bacteria or disease. I liked that difinitive approach for a disorder that feels so abstract at times. Ironically she had normal results for strep, mycoP and Lymes but she fit the PANDAS dx perfectly. Her symptoms were severe and came on within days. Scariest thing I've ever seen. It's unexplainable until you've lived it...as all of us here know. Biaxin improved things for her to a point but 7 wks ago Dr. T. switched her to Augmentin and that has been her best abx so far for her. She's about 85-90% better now. The true test will be if she goes to school when it starts. This popped up the last month of school (about 4 wks. after tonsils and adenoids removed) and she missed pretty much the last month of school which is just so unlike her. Bring a pen and paper to take notes @ appt....lots of info! If in the Philly area, another mom and I are starting up a support group! Best of luck!