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Everything posted by Agnes26

  1. Absolutely. What a mess, and this poor girl is trapped in the middle.
  2. I don't really know a ton about steroids as we didn't do the "confirming" burst for diagnosis. Dr. K diagnosed my daughter. He was worried she had a current infection, so he skipped the steroids and put her on antibiotics. Hopefully, someone else can answer your questions.
  3. mpatti, so sorry he didn't have positive response to the steroids. Hang in there. Jenann, yes Augmentin ES is a suspension and is dosed 2x day.
  4. Dr. M had our DD on a pretty hefty dose of Augmentin 600 ES at 55 lb., but I can't tell you what would be right for your kiddo. As far as the taper would go, Dr. M's advice was to stay on the abx until symptoms remitted and then wait until summer break to begin scaling back on the dose. Dr. M has written a ton of medical papers. Have your doctor read those. There's also more info on PANDAS Network you can arm yourself with. http://pandasnetwork.org/treatments/antibiotics/
  5. She is wrong. Dr. M tapers. Our ped has had my daughter on Augmentin for more than a year per Dr. M's counsel. I would fight like crazy to keep your kiddo on antibiotics and at a minimum run myco titers.
  6. Our doctor did for my daughter. Her clock had everything jammed on the right.
  7. Get your doc to watch the grand round video!!It is meant for doctors anyway. Offer to pay him for an hour of his time to watch it! Excellent idea. Thank you. Tried to message you, but seems your mailbox is full?
  8. We have used Clonidine for sleep with much success. ADHD meds (before PANDAS dx) were an unmitigated disaster.
  9. It strikes a cord with me. Definitely. My daughter had a month where she alternated between a catatonic-like state and being feral. It was so bad, we didn't leave the house. She stopped talking, eating, bathing. She would cry over everything and nothing. IVIG brought her out of it. Afterward, she seemed weak and almost infantile like. If we went anywhere, I had to push her in a stroller. She was 7 at the time. She also drew a clock like Susannah. Immunomodulating treatments (IVIG and steroids) definitely help her, but they never last. Pow Pow, if I want to rule this out, what should I do? Call Duke? I've already implored our local neuro. We'll see if I get anywhere with that.
  10. DD8 completed three weeks of intensive ERP at Rothman last fall with great results. She got the flu last spring, and after treating it medically, we have some residual OCD to knock out. I can't find anyone local, so back to Rothman we go. If you've done an intensive tune-up at Rothman, how many sessions did you do and how effective was it? Thanks!
  11. Glad I'm not the only one who doesn't understand the flipping back the pages. I looked for it with HD IVIG #1 and never quite got a handle on what it meant exactly or if we were experiencing it. DD seemed much better on day 1, but not as great on day 2. Then seemed pretty good for a while until we dropped her abx down to prophylactic dose, at which point she tanked. With HD IVIG #2 it was immediate, noticeable improvement. We're about two weeks out. I have no idea what accounts for the difference. It was a higher dose 2 g/kg over two days versus 1.5, she has been on tx dose of Augmentin for a year, and we're pumping her full of ibuprofen. Hang in there.
  12. I had my tonsils out this summer and couldn't take narcotics. They gave me panic attacks. Tylenol didn't touch the pain. My doctor OK'ed ibuprofen and it was a Godsend. It was a full two weeks of pretty intense pain, though. Keep your fluids up. I ate a lot of crushed ice. Good luck with your upcoming appointment.
  13. On the flu mist. Yes! It's a live attenuated vaccine. My daughter's doctor has advised us to steer clear of people who have received the mist on the off chance that they shed the virus. Also, your son and my daughter sound very similar with the medical history: gerd, early infections, unexplained diarrhea, problems with clothing (turned out to be OCD and not control issues or sensory issues as previously diagnosed). Our ped and neuro agree that she probably had her onset at 2.5 and a relapse every Oct./Nov. until she was diagnosed at nearly 7. They got progressively worse. I would not wait and see per your doctor. I would find a doctor willing to help your son now.
  14. Not to hijack, but DD is having IVIG tomorrow. I know she'll get tylenol. What's the reason for tylenol and not ibuprofen with IVIG?
  15. I am not scientifically inclined - at all - so this is me grasping at straws: any connection between valporic acid and clavulanic acid?
  16. I have a long history with strep and was pretty sure I wasn't helping my DD's flares. I had my tonsils out this summer and they found H. Influenza in mine along with Non-group A Strep. My surgeon hit me with Clindamycin afterwards and my DD improved. I saw an ID shortly afterwards to make sure I dotted all my i's and crossed my t's, and he dismissed the H. Influenza as normal flora. I'm interested to hear what you find out from Dr. L.
  17. This. Exactly. I got the gist. Just couldn't summarize. “Our novel findings suggesting altered balance in the dopaminergic system may provide a new approach in understanding autoimmune neuropsychiatric disorders with possible implications for diagnosis and treatment.” Soon, please!
  18. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779221/pdf/pone.0073516.pdf Any scientific minds want to break it down for the rest of us?
  19. My DD's school has student teachers every year. We've hired several as babysitters.
  20. My DD was strep-triggered PANDAS. We have the infection and titer link. Had IVIG with Dr. K. She is on tx antibiotics and was at about 90 percent. She recently flared, I *think* due to hand foot and mouth at the beginning of the school year. Blood work (ASO, DNASE, immune panel) was all normal. Steroid course did provide a brief, but complete respite from symptoms. I have spoken with another PANDAS doctor who said that once the PANDAS/PANS horse is out of the barn, the flares can be strictly autoimmune. We're doing another IVIG with a local neuro. Hopefully.
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