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starwars99

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About starwars99

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  • Gender
    Female
  • Location
    Boston
  1. Hi There My son, 9, is being seen by Dr. Torres (neuro) as well as, Dr. Fuhlbrigge (rheumatologist- PANDAS specialist) at Children's Hospital Boston. Have your Pedi call for an app. will be much faster. but still a little wait. Good luck. Both Docs are great.
  2. Whether they get it or not, believe it or not. IT IS WHAT IT IS! You know. and we, as parents do NOT have to prove anything. We know what is best for our children! Do not feel that you have made a bad name for yourself, you're just trying to be the best advocate for your child ! Make them aware of the problem and ask for a little extra help in the area that is slacking. period. We as taxpayers are actually their employer. and they are the teacher. As far as any teasing-bullying...bring it right on to the other parent. I strongly feel that a sense of normalcy is what our children need. J
  3. I believe my son is a carrier, although never really called that by the docs. No symptoms ever, but tics. When he tics, he's tested. Never a pos by rapid, but will come back pos from the lab. He initially had Impetigo 2 1/2 yrs ago and after that, has never had sign of strep other than tics.. then diagnosed with PANDAS. He has had, and right now does have an elevated ASO and gets better with ABX, so therefore, I do believe.
  4. Have all of your children been for either ? or both? any findings? curious, because my son has not. Thanks so much!
  5. I believe that this time around, thats what happened to him. He definately has improved w/ Azith. I finally spoke with the Pedi, told him of the improvement (but he still doesn't believe it) and very arrogantly...agreed with second round. They've also put in a call to a local PANDAS specialist (That I found and asked for)for me. YAHOO. I know they are just sick of hearing from me, but who cares? I feel my son is getting what he needs. And that's what matters Thanks for the previous info., greatly appreciated
  6. My son plays piano on his tongue, believe it or not. Thumb on the bottom,going thru each one of his fingers on the top. right hand, left hand, then wipes each finger(piano movement) on pants right then left repeating maybe 4/5 times. Sitting at the computer/ doing homework will play fingers on the table. I keep Germ-x close by(haha)
  7. Good Morning to All His throat cultures in the office come back neg. 2 lab cultures have been pos. It came to a point, that the Pedi just called in for ammox or keflex. I left 2 messages for him yesterday, expressing NO Celexa and for more Azith.and wanting to see a Rheumotologist who specializes in PANDAS (childrens hospital) He's been very hesistant in the past to give back to back antibiotics.(arghh) I would like to get my son's ASO level again to see where he's at. Should I be asking for a different blood test...something in conjunction? Hopefully I'll hear from him today, or mayb
  8. Hello To All! I first must say, I just found this website a few days ago, and all of you are so informative. I won't go through the whole history of my son, 9, but he was diagnosed with PANDAS 2 yrs ago. He has absolutely NO symptoms of strep... except for tics. When he tics, he gets Ceflex(from his pedi), usually takes care of it. but not this time. OCD is now very clear to me, when I was thinking he was a typical boy, being obcessed with legos, star wars, perfectionism, etc. OCD was never brought to my attention. Anyway, 2 wks ago his tics became very severe, almost like co
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