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pastacey

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  1. You have totally nailed it in terms of describing what it feels like to have an unsupportive relative. I have been dealing with this for years. One of my favorite aunts just died and left me and my sister nothing. In my fantasy it is because of my son and her belief that he is just a jerk and i defend him too much. (I thought he was supposed to be over autism and all that stuff, she said to me after his PANDAS descent into the dark side). My father and she decided that a kid who swears is a bad kid, even though I tried to explain the Tourette's stuff). My mother in law and my aunt actually
  2. Hi, My son tested positive on CAM and others. WE wish to start abx but were told to get some baselines first. What do you recommend? And how can i explain them to my doctor? thanks, pat
  3. Hi Everyone, My son just recently received positives from Cunningham and I am trying to get my DAN to order a panel of baseline tests before we go on antibiotics. I gave a list that I took from this board and they don't know what some of the stuff is. So here is my question. What tests would you all recommend for baseline and can you be specific enough so that a doctor who doesn't know much about PANDAS etc can understand. 1. Immune status panel -- can you define this for the doctor? 2. C3D immune compound -- what does this mean? -Micoplasma? is that pnumonia antibodies panel
  4. Forgive my ignorance -- perhaps it was Augmentin that he reacted to, but that was ten years ago, and he just got a rash on his face. he does though have mold allergies still, which come and go. He weighs about 98 lbs. How do you define high dose specifically?
  5. I Live in Massachusetts. I love Dr. L so much and trust her -- not to say that the other PANDAS experts are not as lovable. My son has had this problem for 6 years. We did try antibiotics once for about a month three years ago with no noticeable results. Thanks, pat
  6. Hi, Son has rages, anxiety, swearing, OCD, some tics, driving ADHD and bipolar symptoms. All can on at same time when he was 7. Out of the blue. He became a different person. Now he has ups and downs. Meds don't work well. We are waiting for the amazing Dr. L's interpretation of the Cunningham results but it could be weeks. She is taking time off. I love her dearly and want to be patient. Sill, I'm frantic to understand. Son tested in Cunningham as follows: CaM kinase - 150 (mid- PANDAS range) anti-lysoganglioside 320 (above normal mean which is 147) anti-tubuli
  7. My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope? xx, patti
  8. Hi, I suspect PANDAS/PITAND in my son. He had a dramatic change of personality six years ago. What we began to see what sudden swearing, rages, mood swings, swearing repeatedly and then stopping and saying he didn't even want to do that, flipping out if we told him to stop something, obsessions with video games and tv shows he formerly could easily turn off, tearing things off of walls, cutting up sheets with scissors. He also started freakishly begging to measure the school perimeter, and almost desperately needing to count the tiles on the walls. His foot began tapping and he needed to
  9. THANKS! Did you ever use antibiotics? What decided spironolactone?
  10. Hi All, I'm new but I've been at this for six years. Suddenly six years ago out of the blue my son developed rages, ticks, compulsions, disregulation, obsessions -- was a different person almost one day. I have not been working with a good doc and have been given some bad advice. They tried antibiotics three years and and it didn't help after a month so they took him off and stopped thinking PANDAS. Vitamins have helped and a bit of lithium but not much. Now suddenly rages are back after being gone several months. He's not safe with peers or in the community. We are considering a boardin
  11. I am new and having trouble understanding my son's troubles. He changed dramatically six years ago after viral infection, possible strep too, and exposures to toxins. He became emotionally labile, had rages, ticks, impulsivity, loss of focus/concentration. Now he has good days and bad days, good moments and bad moments. I never feel sophisticated enough to understand why. He is so responsive to everything -- foods, chemicals, moods -- how can you parse out if it is strep related, viral related, or just autoimmune?? Is this something a specialist could figure out? Thanks, Patti
  12. Hi All, I'm new. My son is a close match to PANDAS symptoms, including rages, Tourettes, frequent urination during exacerbation, OCD, obsessive behaviors, ADHD, S.I. problems (after having been relieved of them, they came back with a vengence). All of this came on really suddenly six years ago. The symptoms wax and wane, getting worse when son is exposed to virus or strep (or chemicals or sugars, etc). So here are my questions: Currently he has low titers. Does anyone know if Dr. Bouboulis works with low titer patients? Also, would PITANDS show titers? Thanks, Pat
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