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Worried_Dad

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Worried_Dad last won the day on February 3 2017

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  1. For our ds, IVIG alone didn't last until we got the right dose of the right abx ("Saving Sammy" dose of augmentin XR). In our case, we later found that our entire family had elevated ASO, so the problem may have been that he was always re-exposed after IVIG. (We did 3 rounds with Dr. K.) So - based on our experience - I think it's crucial to find the right dose of the right abx for your child, then go for IVIG as the "big gun" to get the autoimmune response under control. That gives your child the best chance to avoid re-infection and maintain their gains. Others' experiences may be
  2. Just finished reading the April issue of Discover Magazine. It included an interview with Dr. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University's Mailman School of Public Health. Dr. Lipkin was involved in the ground-breaking study that announced in 2009 the re-creation of PANDAS (essentially) using a mouse model ( http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice ). Toward the end of the interview, Dr. Lipkin specifically mentions PANDAS as "one of the most fascinating links between infectio
  3. When our ds was in full PANDAS exacerbation, he repeatedly begged us to kill him and said he "just wanted to die." Unfortunately, this is not unusual: when their brains are literally on fire from the autoimmune attack / inflammation, they are as overwhelmed as we parents. A few words of warning from painful experience. If your child expresses suicidal thoughts, take it seriously and monitor closely. Our ds did try to act on those feelings one time, grabbed a kitchen knife (luckily a dull one) and dragged the blade across his wrist. Absolutely terrified us! Also, many of the tradit
  4. Awesome news - success stories are much needed and appreciated!!! Just curious, had you altered ds's treatment regimen at all recently? Any new meds, supplements, therapies? Always looking for clues to get our ds to that nirvana state of "complete PANDAS remission".... ;-)
  5. Our ds had been making steady progress on the "Saving Sammy" dose of augmentin XR (1000 mg twice daily) until last Fall, when he came home from school complaining of feeling sick and his PANDAS symptoms surged more noticeably than they had in years. Eventually we took him to the local family doc, who took one look at his throat and said it looked infected, probably strep. We kinda freaked - how could he possible have strep throat on treatment-dose aug XR?!? Local doc (still a PANDAS skeptic) prescribed standard zithromax 5-day Z pack, and our ds felt better... but started to backslide af
  6. Hi, JunkyardJean (cool user name!): Our ds was originally diagnosed with ARF / SC due to symptoms similar to your daughter's although he had severe "seizure-like episodes" in addition to the migratory joint pain. After his ASO titer came back highly elevated, a local doc made the SC diagnosis. It definitely seemed to fit. Later, after abx were discontinued and he had another major exacerbation following strep exposure, the diagnosis was officially changed to PANDAS. Frankly, I think ARF, SC, PANDAS, and a number of other similar strep-induced autoimmune conditions (reactive arthriti
  7. Hi Worried Dad, I could be wrong, but I'm pretty sure Augmentin XR only comes in 1000mg tablets. If it is a 500 mg tablet, then I don't think it is extended release. Hah - yeah, that's what we thought, too, and maybe that was true in the past. But both our LLMD and pharmacist assured us that aug XR is currently available in 500 mg tablets, and that's what the LLMD prescribed to give us more flexibility in adjusting dosage and "ramping down" over time. Looking at the bottle right now, and it says "Augmentin XR - Amoxicillin/Clavulanic 500MG/125MG PO TAB" on the label. So for those
  8. In Sept 2011, our PANDAS ds had his worst flare in 2+ years, since starting the "Saving Sammy" dose of augmentin XR. He felt miserable, went into our family doc (not terribly "PANDAS friendly") who looked at his throat and said "wow, it looks red and infected." D'oh! We couldn't imagine he could get a GAS infection on the aug XR, but something hit him. Family doc gave us a 5-day zithromax Z pack, which made a big difference... until it ran out. So now ds (thanks to our main "PANDAS-friendly" LLMD) is on 500 mg of aug XR twice a day and 250 mg of zithromax daily. The combo seems to be
  9. We did the "Cunningham test" before and after treatment for our ds. His CamK II level was 197 (high PANDAS / low SC range) before IVIG. After IVIG and treatment-dose abx, we re-tested, mostly to confirm the improvement we saw and also because Dr. C felt this would have research value for her. His CamK II level had dropped to 109. Can't honestly say if it was just IVIG that produced the drop, or the "Saving Sammy" dose of augmentin XR, or both. But the level came way down, which was comforting!
  10. Our PANDAS ds has frequently complained of dizziness. During his initial illness (when he was diagnosed ARF / SC), he often had a clumsy, drunken gait while walking and seemed to have balance issues, sometimes crumpling to the ground (we called it "the rag doll effect"). This is a common symptom for SC and appears to affect PANDAS kids as well. Related to the basal ganglia inflammation / motor control issues?
  11. Great news, Nancy! Praying our ds (who turns 16 in June) can follow in your son's footsteps!!!
  12. Yeah, I was trying to be funny. There's a reason I haven't landed that special on Comedy Central yet, eh? But I do sincerely believe that the info shared by the "scientifically minded" on this web site has educated me more thoroughly than any other source. So maybe a "forum paper" is a better fit?
  13. Wow - those are excellent credentials for evaluating these research papers. I think you and Buster should collaborate on a "PANDAS white paper." That's one I know I could support without reservation!
  14. Our PANDAS ds's original symptoms began with joint pain and muscle weakness: classic ARF symptoms that were followed 6 weeks later by SC symptoms (seizure-like episodes of choreiform movements). Several of the PANDAS specialists with whom we've consulted believe that ARF, SC, and PANDAS are all on the same "post-strep autoimmune spectrum" of illness. So Lyme is definitely something to consider, but this can also be a post-strep, RF-like symptom.
  15. Overall, I'm heartened by the white paper. Seems like it's an incremental step in the right direction. My take at this point is that Dr. Swedo is being very, very cautious as she makes the case for PANS because she and her team were attacked so ruthlessly for the original PANDAS hypothesis. Here's the statement that struck me: As others have mentioned, the main "PANDAS bashers" came from the tic / Tourette's camp, so avoiding anything that overtly antagonizes this group is probably a political necessity at this point. I agree that it's frustrating - our ds originally presented wit
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