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Hi amazing parents, Can anybody in the Boston area give me names of docs in the Boston area who are willing to do IVIG and IV steroids for PANDAS/PANS? Been trying to locate docs that could do this for my dd if necessary and coming up empty. Thank you for any potential suggestions or leads. -
Hi, I am new here. We think my 8 year old son has had PANDAS/PANS for 5 years. I found out about PANDAS/PANS a year ago but was talked out of it by providers until earlier this summer when he flared again. He is finally being treated at MGH. So my question is what to expect now. So far this summer, he has been on amoxicillin (1.5 weeks, no effect and came down with bronchitis), ceftin (1 week no effect), ceflex (15 days no effect), and augmentin for the past 4-5 weeks (some improvement at first especially with appetite, but not sure). Because we wanted to do everything we could to improve things before school, we tried a 25 day steroid taper. we have seen really wonderful results from it up until the past couple of days. We only have 6 days left on the taper. Also, since the steroids were really interfering with his sleep we broke down and started melatonin again 4 nights ago (I had read it lowers the effectiveness of steroids). The last two days we have seen his anxiety ramping up. Any thoughts? Have we lowered the effects of the steroids with melatonin? What does it mean if he did great on steroids, but we see things creep back as he tapers off? Thanks!
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Hello, We just had a T&A for both daughters 4 days ago. We have a 7yoDD with PANDAS and a 6yo DD strep carrier. Both girls still get strep while on abx. I've been reading through the posts on tonsils and see that some of you have used steroids after the procedure, some clindamycin, and others did other routes. Can people chime in with what changes you made to meds after the T&A procedure and how you thought that change worked? I hadn't thought about steroids although they have always been helpful to my DD as well. We did not do IV abx and I am now wishing we had. Since the surgery, PANDAS DD has been a sleeping machine and I'm wondering if she also had sleep apnea as others have indicated. We had not done a sleep study. Our DD has had PANDAS for 5 years. Thanks, FA