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cwmom's Achievements

  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 a chronic condition that flares and remits but it is so nice to hear happy stories!
  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 that the party is over time for friends to go) All in all I am so impressed with his tenacity but this flare has been going on since the fall and he is getting more frustrated and tired with the whole ordeal. btw, he is failing math at the moment but honestly we are just happy he is able to even go to school!
  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 wants to treat him. Neurology wants him to see psychiatry, Rheumatology "has nothing to offer" since IVIG denied. Our poor PCP is trying. IVIG was rx'd but our insurance denied x2. We were offered SSRIs and Klonopin and we used it- had to had no other options. It has been about 10 weeks and I think he is turning the corner (sense of humor coming back) he was able to go to school throughout and maintain friendships.... but grades have plummeted. His teachers are very kind but I am sure they do not know what to do with this type of learning issue. On low dose SSRI off klonopin. I will continue the SSRI because perhaps it is helping- It is certainly not hurting him at this point. It is funny after we went through this in 08 I promised him and myself that we would never be in medical limbo again and yet here we are
  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 it is an inflammatory process triggered by an immune response directed at the basal ganglia with resulting inflammation) Resolution depends on different factors ( # of previous infections,strain of bacteria in community, genetics, chronicity of exposure....) that is why I think some kids recover quicker some need alternate antibiotics if their particular strain is more resistant to pcn or amox.. because all immune systems are not created equally. Which may explain why some kids require IVIG or plasmapharesis.... I would live to see more research into these factors so that a decision tree algorythim can be developed for primary care clinicians
  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.
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