JSL25

That’s a very interesting article. Thank you for finding it and sharing it. The difference we’re seeing with my daughter is absolutely night and day. It’s nice to have my observations validated.

OP here - for some reason my earlier reply re-posted. Not sure why...sorry about that. Thanks again for the links and suggested reading. I will look into it. I have a neuro appointment on Friday, so I will certainly be bringing this up. We're located in a suburb of Philadelphia, and it has been a STRUGGLE to say the least to find a PANDAS friendly doc. We have driven to northern NJ, Baltimore, Wilmington, and all over the Philly suburbs to get help.

Thank you for your reply. I really appreciate it. We are waiting on a neuro appointment when they call me back to schedule, and am appt with Dr. L. Unfortunately we don’t have any PANDAS/PANS friendly docs in my area. I searched endlessly last year for 6 months. It’s a hopeless feeling to not be able to get help. Anyway, I am so surprised one of your docs said Ibuprofen is ok indefinitely. And I was worried about a week! I just don’t know what to expect from these flares...how long they last, are abx necessary, can Ibuprofen shorten the duration (or is it only a band-aid), etc.?

Thank you for your reply. I really appreciate it. We are waiting on a neuro appointment when they call me back to schedule, and am appt with Dr. L. Unfortunately we don’t have any PANDAS/PANS friendly docs in my area. I searched endlessly last year for 6 months. It’s a hopeless feeling to not be able to get help. Anyway, I am so surprised one of your docs said Ibuprofen is ok indefinitely. And I was worried about a week! I just don’t know what to expect from these flares...how long they last, are abx necessary, can Ibuprofen shorten the duration (or is it only a band-aid), etc.?

My daughter (age 4) had her first noticeable flare with what we believe is PANDAS about a year ago. Many doctors visits and no one was able to help us. We finally got in to Dr. T in NJ when she made a drastic improvement on her own (6 months after initial onset), so we decided not to follow up with him. Now, 6 months later, it all came rushing back. I’m trying to get into doctors appointments again. While we wait, I tried giving her ibuprofen 2xday for three days and she was 100% back to normal. Miraculous. Now, 36 hours off ibuprofen, symptoms are back. How long can I give her ibuprofen for? I realize this is not a long term solution. She’s currently not on any other meds except for a probiotic. And, I’d love to hear how people successfully battle these flares so I have some background to go into our specialist appointments with. Is it always a course of abx? Thank you. I’m so frustrated we’re back in this nightmare.

Yes, we have. I'll private message you.

Thank you for the name. I'll give him a try. Waiting to hear back from Dr. T. I requested a new appt three days ago.

I'm also in the Philadelphia area seeking out treatment. I've been calling around all week and will let you know if I come up with anything. So far CHOP has been no help at all. Neither has DuPont. I've been to several docs at both places.

I forgot to mention in my last post that both doctors said that CHOP could audit them if they gave out too many abx; therefore, they were hesistant to do it.

Thanks for your replies. Our neuro and our ped are hesistant to give more than 30 days of the abx. Neither is well-versed in PANDAS and I'm having trouble finding a PANDAS doc in reasonable driving distance that won't use all of my savings and that can see us sooner than 3 months. Although the Augmentin helped my daughter TREMENDOUSLY, it almost seemed to become less effective around day 25. Does anyone have any thoughts on that?

My 3yo DD started with an explosion of tics about 3 mos. ago. With the tics, we've also seen severe stuttering come and go, night wakings, wetting and spoiling accidents and massive tantrums and mood changes. She's become very afraid of loud noises, including the toilet flushing. We have seen three neurologists at CHOP, an infectious diseases doc at DuPont and her reg ped countless times. She's had extensive blood work (Lyme included), EEG and an MRI of her brain. All normal. We discovered that she did have strep after the tics began and we have no idea how long she had it because she had no typical symptoms. Doc gave her abx for strep and mood and tics drastically improved. After 14 days on abx were over, it all came back. I begged neuro for 30 days of Augmentin and she agreed to try (with the disclaimer that she didn't really believe in PANDAS). 14 days into the augmentin and DD was 99% back to normal. Now the 30 days are over and tics and behavior issues are back worse than ever. A new very severe tic has shown up within 5 days of stopping abx. Neuro has thrown up her hands and doesn't seem to know what else to do. I'm totally panicking and feel helpless. Any suggestions of who to see? I'm near Philly.

Hi, we are fighting a similar battle (different symptoms though) with my nearly 4yo daughter. This has been going on since September. We live in the Philly suburbs and have seen 3 doctors at CHOP, none of which want to discuss PANDAS. One of the neuros was willing to give us a 30 day prescription for augmentin and it drastically improved the symptoms. Like nearly back to normal. There's no doubt in my mind the antibiotic helped. Now we're five days out of the antibiotics and the symptoms are flooding back. It's a nightmare. The neuro said she doesn't know what to do next and has recommended we see a movement disorder specialist at Johns Hopkins - Dr. Harvey Singer. I've read about him on this board and I'm not sure he's going to really help us. I don't know where else to turn. I can't find anyone that will treat her or help us. SAR2011 - I'll keep watching this post and will share any doctor names that I think are helpful if we find any. Will you do the same? Sounds like we may be in the same geographic area.