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dfw

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  1. I think every child with PANDAS symptoms should have an EEG. My child's first EEG, about 2 months after PANDAS hit was normal as well. She has since had four abnormal ones. She was having absence seizures, and we had no idea until they did a 24 hour EEG and recorded over 25. We were with her the whole time and were certain she was not having seizures. We even took her to another neuro office because we were not convinced and did not want to start seizure meds. Absence seizures are so subtle, we were missing them. Our child would stop mid-sentence just for a second. Or glance briefl
  2. We've seen two pediatric neurologists in Ft. Worth. One not a PANDAS person, the other open to it but not willing to do much at ths point.
  3. Thanks for keeping us posted on your trip. We are supposed to go next month, so I was happy to see it went well for you. Do you know if it is typical to test the whole family? What are they testing for? Do you have to travel back to CT for the follow-up? Good job by your little one on all the travelling. I doubt my 4 year old (not dealing with PANDAS) would have held up as well.
  4. Thanks for all the replies. We never had a positive strep test, so its hard to just wait and hope on the Augmentin. Appreciate hearing others experiences with it.
  5. Does anyone know how long it shoud take to see improvement in pandas symptoms after beginning Augmentin (875 mg twice/day)? We've been on for 10 days and no improvement. Prior to that, it was Doxy at 50 mg twice/day which seemed to almost clear her first symptoms, but symptoms began again in May while still on Doxy.
  6. Does anyone know what time the lab closes? If it closes before they see you, do they give you paperwork to have the tests done when you get home?
  7. Trying to decide which PANDAS dr. would work best with someone out of state. We don't mind traveling for the first appointment, but would like to have access via phone/email for questions or sudden flare of symptoms. Also would like to know how valuable it is to see a PANDAS dr. when your child is not in a full flare (but showing some symptoms) and not positive for strep or myco.
  8. We are in a similar situation, about four months ago the initial episode. No IVIG, but our daughter is doing pretty well (though not 100%) after trying several different antibiotics. I feel like we just kept spinning the wheel of antibiotics and finally landed on the right one for whatever triggered it this time. I was wondering how you developed your response to flares plan. Do you see a PANDAS specialist, or was it trial and error? We have seen several different types of doctors in our area, but if it happens again, I don't think we would be much better off in getting the right treatmen
  9. I was wondering if anyone has used Dr. David Owen with Dallas Pediatric Neurology for PANDAS. I saw his name on the PANDAS lists but could not find posts from anyone after seeing him. I also was wondering if anyone has recently seen anyone at Texas Children's in Houston. I saw older posts that found little help there, but would like to know if any one has any recent experience with them (hoping they have started to treat PANDAs). Thanks, Teri
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