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  1. My daughter, who was diagnosed with PANDAS at age 8, also has what our neuro said is a tremor....she is 12 now and it has not gone away.. She did not have it before her PANDAS onset. You can also see it in her tounge if she sticks it out. Some days are worse than others. From what we know there is nothing you can do about it...If anyone else has found a way to stop it please let me know.
  2. Hi, my daughter (who was diagnosed with PANDAS 3 years ago) has been having what I thought was an allergic reaction to something for the past few months. Her hands and arms get red and itchy and sometimes burn. Sometimes her legs and feet get it too. We just went for allergy testing both skin and blood and everything was negative. The Dr said it could possible be an autoimmune response.... She even got blisters the last time on her legs and face.... Has anyone ever heard of something like this or had a similar experience???? Thanks, Michelle
  3. We were working with Dr. Torres (neurologist) at Children's in Boston who originally diagnosed my daughter with PANDAS in 2008. He is anti, antibiotic so we basically got the diagnosis but not help for treatment other then a referral to a psychiatrist. When he left the hospital we transfered to Dr. Wolff (neurologist) in the Waltham office of Children's and he is very supportive of her PANDAS diagnosis and started her on antibiotics and is building a case for IVIG if needed in the future. We are very happy with him!
  4. I am North Reading so Salem is perfect!

  5. I am North Reading so Salem is perfect!

  6. Hi Michelle,

    I saw your post. Wow. How scary for you. I've not had any seizure experience so can't offer advice in that dept. I can offer an ear, though.

    You expressed interest in the Salem support group. Where do you live? I am in Salem as were a few others in the group. We also had someone from M'head, Lexington, Hamilton and NH.

    If you want to talk, my# is 97...

  7. My 12 year old daughter was diagnosed with PANDAS in 2008... She initially presented with severe anxiety and OCD (compulsive thoughts, mostly about eating, seperating from me and school) and then we found out she had strep, (she did not have any typical strep symptoms).She was diagnosed with PANDAS @ Children's in Boston but we were basically referred back to a mental health provider to treat her symptoms. We went through ###### with her not eating (she lost over 20lbs) or wanting to go to school and trying all sorts of pysch meds. She is now on 50mg of Prozac to keep her symptoms under control but if she gets or is exposed to strep they flair up.... This past Saturday night she was at a sleepover and she threw up in her sleep and began thrashing her legs...the girls could not wake her up and after several minutes then woke up the dad and he couldm't wake her up for awhile either. We had her checked at urgent care and they did all sorts of tests including tox screens which were neg then they started thinking seizure. Late Sunday night after being transported into Boston by ambulance for CATscan and more tests, etc. We were released and told to follow up with our Neuro the next day. When we woke up the next day she was still really out of it and twitching, she was staring off and had that funny look in her eye and her pupil looked big to me. I brought her to her pedi and she did not like how she looked, she was so limp and dazed she could not even recite her ABC's. I asked the pedi to do a strep test to rule out a PANDAS flair up and sure enough it was positive, again she was not sick and had no typical strep symptom. We were sent to the Chlidren's ER to meet to nuerologist immediately and they started her on antibiotics right away. We have to sleep deprive her tonight and go back to Children's tomorrow for an EEG.....She is still sacked out on the couch, very tired, with a bad headache. Has anyone had anything like this happen or heard of something like this before????
  8. Hi! My name is Michelle and I just joined the message board. I live local and have a 12 year old daughter with PANDAS. I would love to join you guys next time!
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