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WorriedMom1 last won the day on May 20 2015

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  1. Hi Mountain Mom - My daughter has never had positive strep titers or a positive strep culture (though she did have strep when she was much younger before some of her earliest PANS symptoms). With respect to strep antibodies, my daughter was considered a strep non-responder: her body mounted almost no response to strep at all. Evidently, this is typical in about one-third of all PANS patients. The reason why our doctor's advised a tonsillectomy in my daughter's case is because: (1) her blood work consistently showed her body was fighting an infection and there was no obvious source for the in
  2. Hi - One question: Does your son still have his tonsils/adenoids? Your son's pattern of improvement and relapse is nearly identical to that of our daughter until she had her tonsils/adenoids out last summer. It was a game changer for us. She no longer relapses with exposure to infection, and she is back to riding her horse again after 3 years out of the saddle. (She is a show jumper and jumps 2'9" at 11 years old). Our daughter has been treated at Stanford and they have seen improvement in other patients post tonsillectomy. Good luck and don't give up hope.
  3. There are at least two published reports showing a correlation in tonsillectomy and reduction in OCD symptoms. In our own daughter's case, I wish we had gone the tonsillectomy route sooner. She had severe and sudden onset of PANS at age 7. She would improve greatly with Solumedrol IV, but flare again with each infection. Each flare got much worse than the one before. She has never been strep positive, but her blood work showed signs of chronic infection. This past summer, when she was 10, our clinic said that we need to have her tonsils out pursuing further options. At that point, she w
  4. Hi - From my perspective, your son's symptoms are textbook PANS/PANDAS: tics, separation anxiety, OCD/repetitive tendencies, choreoform movements, difficulty sleeping, food aversions, mood swings. Even his urinary imcontinence is a PANS symptom - it signals a neurological problem. Our daughter presented with the near exact same cluster of symptoms (minus the tics). Her strep tests were negative and all of her strep antibody tests were very low. They were so low, in fact, that the doctors say that there is every indication that my DD does not mount a typical antibody response to strep.
  5. Hello - My dd 8 had her second Solumedrol infusion in two months on Saturday. After an initial burst of energy on Sunday, she has been extremely fatigued for the past 48 hours. After making it to school for the first three weeks of school (with a few intermittent absences and tardies), she has been too tired to get out of bed much before 11 am ... and far too tired to get dressed, groomed and ready to go out the door. Has anyone had a similar reaction to Solumedrol? We made such tremendous gains last time, but her first infusion was during the summer. So we did not have to get her out
  6. Our dd will be having her first solumedrol pulse this week. My husband and I were wondering what we should expect by way of side effects after the infusion. Will she likely be tired? If she has had steroid reactions in the past (e.g. irritability), how long will those side effects likely last? We had a very positive response/experience with her steroid burst, but because she will be receiving a larger dose of steroid, we wanted to be prepared for the potential side effects. Thanks for your help.
  7. This is my first time posting to this forum. My now 8 year old daughter had sudden/severe onset of OCD in late Dec. 2014, which was accompanied by severe separation anxiety, huge mood swings/emotional liability, panic attacks and sensory needs. She has been out of school since mid-February. After much trial/error, her mood has calmed with SSRI but she remains extremely reluctant to leave the house, will not let me leave other than for short periods of time, and still has compulsions/obsessions. Stanford's PANDAS/PANS Clinic told me last week that they are not accepting new patients until J
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