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Bttrfly1

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  1. Thank you so then how do you treat a flare? Do you wait it out?
  2. Doing some research on the message boards. What happens if you ride out a cold? Will immune system eventually right itself? Can a kid with a PANDAS get over a flare from a cold without steroids?
  3. Steroid

    My son had been fighting a cold virus which seems to have triggered some tics. His dr prescribed a steroid burst but today his symptoms seem a little better. What will steroids do and should I watch and wait until symptoms are worse? I'm so scared for him / will steroids prevent another flare? He had ivig in June. Thx
  4. Turning Back Pages

    Thank you, Jan. We are new to all this and freAking out watching the tics come back. Is there anything I cAn do to stop it? When will it end? We did tAke him back to dr to get cultured. So stressful. Is there a flare after 10 weeks post iVIG too I feel like I read that.
  5. Hi again my son had ivig this summer and it's now 10 weeks post ivig. His tic of peeing has come back timing about right with a cold. Is this normal? A breathing he is mildly doing. Is this turning back the pages and when will it end?
  6. IVIG and Flare

    Thanks you are right.. both my kids are carriers too. Never presented with sore throat or fever. Frustrating.
  7. School is about to start and I'm worried about strep exposure. We are recently diagnosed PANDAS and got IVIG in June. We have been advised to get 504 this year - here's my question, what do I do if someone in his class has strep and they let me know? Other than anxiety what am I supposed to do? He is on a year of antibiotics- do I watch for flare and test for strep? Do I call and ask for stronger dose of antibiotics? Do pAndas kids flare with common cold virus? Should I call doctor? Thanks for your comments.
  8. What about David Band? He's one of the recommended drs. in the northern Virginia area. We don't want to wait to see Dr. L. Any experience with him?
  9. that's wonderful! we live in Fairfax, va. Anyone closer? Also I'm new here.. is there a connection between PANDAS and Lyme?
  10. Hi, I just got back from our pediatrician's office about my DS. He started acting off (btw - no one noticed except for me for a few weeks!). Symptoms were frequent urination and then this breathing thing, where he's also sucking in air (deep breaths and air hunger). I encouraged Dr. to do a strep test because I saw something about PANDAS on my facebook page. Dr. did it and throat culture and blood test showed positive for Strep A. He got on a 10-day course of Cefrin? Urination kind of got better to the point where I don't obsessively watch for it but in exchange the breathing is now worse. We went back today for a follow-up and I asked for two courses on a different antibiotic. Dr. refused and said she would only treat if he tested positive on throat culture. I also requested appt. with Dr. latimer to rule out or treat him for PANDAS but that isn't until June 6. Is there anywhere I can go to treat sooner? Dr. Walsh in Leesburg - or a empathetic dr. who will diagnose? Please send me recommendations. There has to be more doctors out there. Thx
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