Starting Support Group

[kmom]

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!!!

[ajcire]

Are you located near Dr. T?

[DebC]

Another mom and I started the Dallas/Fort Worth area support group. If you or anyone else interested in attending belongs to a church, I would start there. Our church allows us to use their building free of charge. I have a key to the building and all that is required is that I put the tables and chairs back as they were, turn out building lights, set the alarm, and lock up. Libraries are also a good place to start. However, you have to work within their hours.

 

Our meetings begin at 7:00 p.m. to accommodate working parents. We get so busy sharing ideas and progress that we have been known to meet until nearly 11 p.m. I usually arrive about 30 minutes before the meeting to set chairs up in a circle. I also bring a few tissue boxes just in case anyone needs them. We start by going around the circle and introducing ourselves and talking about what has gone on since our last meeting. We have had one speaker so far, a chiropractor/nutritionist who was working with one of our PANDAS families and is now working with several of us.

 

We publicized through Beth Maloney's Facebook pages as well as through Latitudes. We've asked to be listed on the PANDAS Resource Network but so far we aren't there yet. I'm guessing that we will be there on their next web page update.

 

If you have any other questions, please let me know!

[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!

[ajcire]

Ah.. I'm not far from Dr. T so thought I would check to see if your group was going to be local.

[philamom]

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!

I'm not so sure it has more to do with "something happened with strep this year" but because FINALLY pandas is getting more recognized, thus people seeking out treatment. I found Dr. E extremely nice when we saw her 15 months ago and she agreed my daughter had PANDAS (was already diagnosed)...but she was against proph. abx and recommended waiting until my daughter was completely non-functional, and then consider PEX. I'm glad to see changes are being made!!! Yes, I agree with Dr. chansky being a guardian angel.

[kmom]

Yeah, I agree. At first I thought the docs were right and something strange happened with strep this year but the more I researched, we're just on the cusp of much more to come with PANDAS and the disorder is finally being recognized/treated more nowadays thank goodness!!!