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cwmom

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Everything posted by cwmom

  1. I would suggest checking a stool culture for c-diff
  2. I emailed them as well. I cried the whole show because in my gut I think he is a PANDAS child. His tics were out of control ... but when he spoke to Oprah he just seemed like such a sweet lost soul
  3. Hi everyone, I was wondering how many parents are health care providers? I am a Pediatric Nurse Practitioner with Doctorate in Nursing Practice and interested in writing for professional journal- Have been thinking about it for couple of years and feel the time is now- we really need to educate our PEERS!!!
  4. Thanks for sharing your story! I feel like we have similar kids. My son too plays travel sports (baseball and basketball) thank god because when he was in the worst of the PANDAS in 2008 basically fits of panic, anorexia, severe OCD the only thing he could do was play baseball. He couldn't interact with his team mates but he played. He was fine for 2 years (except for TICs after flu last winter) But this fall bad FLARE after virus - severe anxiety finally getting better. We are in the process of trying to get IVIG (denied x2 despite low IGG IGA...) I think think of this illness as
  5. My son has always complained of frontal headaches- since age 5. He is now 13y. He had the 1st PANDAS flare at 11. He has had another flare since september and the constant symptom he has had is a frontal headache. I too wondered how many kids have this as a symptom.
  6. Absolutely!!!!! My 13yo son has been a trooper. His guidance counselor does not see any of what we describe. At home he can be anxious , moody, irritable, sullen, quiet voice.... She states He is even a bit of a class clown during the day. He is pretty popular. But when that bus pulls up and the pupils dilate I know it can be a rough afternoon. What seems to work for our son is to have a friend over in the afternoon he plays video games and basketball all in an effort to distract himself. He has had times where even with friends he will still become quiet and anxious ( the sign
  7. The flu!!! i influenza A and H1N1 last winter caused awful tics ( happened twice)
  8. Is it me or does it seem that an extraordinarily high number of cases present at age 11??? Just seems like when I hear of a new case i assume they must be 11. what are others experience?
  9. I am so sorry to hear this but we are in the same pandas flare boat as you. ]My son said all he wanted for christmas was for his anxiety to be gone.[/b] Guess what ? He didn't get that one item " Charles Woodson football shirt" which triggered the cascade of emotion and the realization that not only was the anxiety not gone it was worse! terrible day for a really great kid
  10. Thanks so much, We actually have an appt with Dr. L in MD - I will post after we see her -
  11. Hello to all, It has been a long time since I have posted on this site. My son had an extreme case of PANDAS in the summer of 08. He recovered completely (on prophylactic abx/tonsillectomy) ( Except for episode of tics when he had influenza A last winter) September 2010- Sudden onset obsessive thoughts/anxiety/ HUGE DILATED PUPILS just wasn't himself- we knew right away, but this time strep/ASO/AntiDNAse B all normal. last time he had classic rise in ASO... He had a virus trigger this episode (sore throat /diarrhea..) The problem has been that no one in the medical community
  12. Hi, Just for clarification this article is about my son- I was happy it was published because I feel like every bit of public exposure will help. The main point that was missed in the piece was that my son is under the care of a rheumatologist- Neurology felt exactly the way one of the responders described. " that he fit the criteria for pandas but prophylactic abx are not in his opinion indicated (based on the literature) I am not sure abut the ant inflammatory properties of antibiotics- What I do think antibiotics do are PREVENT future infection. How I view PANDAS is that i
  13. My son was diagnosed with migraines at age 5 ( followed by a headache specialist) the headaches waxed and waned. Now I am wondering if he had strep during any of those exacerbations-- still gets occasional headache but not nearly as bad.
  14. Do you monitor their titers over time? I guess this would be the only way to try to track.and trend over time. If the PANDAS was due to strep then you should see a rise in titers several weeks later ( no matter where the source of the strep was) Dr Fuhlbrige is an advocate of monitoring titers over time ( at the same lab for consistency) and prophylactic antibiotics for those that meet criteria -- he likened this disease to Rheumatic fever and spoke at length of not even missing one dose of the antibiotic because as with RF you are left susceptible. I think if anything he is giving
  15. just to be clear -- I don't think the antibiotics had anythig to do with his clinical improvement -- I think it was time and resolution of the brain inflammation. What I think the antibiotics do is PREVENT further strep starting the whole process again. he is on 250mg bid ( he weighs about 68lbs) We did miss a dose this winter he went to a sleepover and he started having facial tics his titers did go up weeks later as well ( although not dramatically) the tics disappeared and never returned and we never miss a dose now. I hear you about struggling--- I am a fan of never upsetting the ap
  16. I have written twice already and I also sent a letter to Frontline and never got a response from anyone very disheartening but we should keep trying!
  17. Hi Michele, Dr Fuhlbrigge is a Rheumatologist ( an expert in Autoimmune diseases) Our son was so severely panic stricken about medications ( or any chemical for that matter) that it took about 6 weeks into the illness to even get that started. We didn't get to Dr Fuhlbrigge until after that-- at this point his ASO titters were higher ( rising titer) unfortunately no one ever throat cultured him at onset of illness- ( even though he had a sore throat, headache and vomiting) The psych sx were just so severe that it clouded the diagnosis. He did a course of keflex initially when the titers w
  18. I thought the article was not dismissive of PANDAS but rather supportive of the need for further research. A couple of things-- Dr. Fuhlbrigge is my son's doctor. He placed my son on prophylactic antibiotics for presumed PANDAS last September. Our appointments with him are always 2-3 hours. He is thorough and compassionate. BUT most importantly he knows the literature inside and out and is great at explaining his views on it. He knows it is controversial in the general medical community but he is willing to look at the big picture and give his impression based on the childs symptoms as well
  19. I thought the article was not dismissive of PANDAS but rather supportive of the need for further research. A couple of things-- Dr. Fuhlbrigge is my son's doctor. He placed my son on prophylactic antibiotics for presumed PANDAS last September. Our appointments with him are always 2-3 hours. He is thorough and compassionate. BUT most importantly he knows the literature inside and out and is great at explaining his views on it. He knows it is controversial in the general medical community but he is willing to look at the big picture and give his impression based on the childs symptoms as well
  20. I am actually a Pediatric Nurse Practitioner and chose tonsillectomy and adenoidectomy for my child. The ORL surgeon we sought ( because he had experience with it) has done about a dozen T&A's for PANDAS kids and notes improvements in all-- to varying degrees. I have found with PANDAS in general sometimes you have to weigh the risks and benefits-- I feel for my childs case it was very worthwile however I realize that it may not be for everyone good luck!
  21. No Piano-- plays trumpet No middle finger just kind of taps his thumb to other fingers but symmetrically. His handwriting is terrible ( but always has been) does not seem to bother him with sports. He is an avid player football, basketball, baseball....has the movements but works around them.
  22. Have any you noticed your kids having any funny hand movements . My son had almost continuous piano playing like movements when his illness was at its worst but they went away. and recently returned ( at a much lesser level) Otherwise he is fine. His OCD is completely gone/ I have posted his labs in a separate post. Thanks!
  23. Just an Update on the tics-- as of 1/28/09 tics just about completely gone had labs redrawn on 3/2/09 ASO was 199 AntiDnase B 680 ( ironically he had a headache sore throat that day throat cx negative
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