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Everything posted by T_Anna

  1. There is a discussion on Facebook about whether IVIG works for PANDAS patients who have had onset longer than 6 months. Someone mentioned that SCIG might be better and I was curious if anyone has done this. T.Anna
  2. OK, here are our results, we didn't get it in color. I heard that over 200 is indicative of Syndham Chorea. Hmmm, tried to attach the picture and that didnt work. Here is a dropbox link: https://www.dropbox.com/sh/ky89ee71fl19g38/cCUTBXhaGx
  3. Usually the last line has an arrow tgat shows were the patient falls when all 5 things are calculated. DS was in normal antibody range but had over 200 in CamKinase which resulted in PANDAS highly likely. T.Anna
  4. <<there are so many great stories about children gettng better only from abx>> I heard one Radio Pandas show where the host said that everyone is different and if one antibiotic doesnt work try another and another until you find something that works. I agree with what people here have said, Ominicef, Keflex and many other abx can work where other things have not. Good luck, T.Anna
  5. This board is about learning and supporting. In July, I posted a negative experience about a specific doctor in NY and I learned from the experience. My comments had hurt a member and I had made generalities about about the doctor, staff and hospital. It was wrong. My experience was fact, but not my inferred "warning" to others. The forum was supportive, in the end everyone will have to make their own way. I have received many PM's with treatment and doctor suggestions, that is the best way to get honest and relevant information IMO. My issue with paying for calls: If I call a
  6. Dr. T has helped us a lot. There have been some communication issues, but he really knows his stuff. Just felt I needed to put in something positive. T.Anna
  7. PowPow, so great that she is in school!! T.Anna Hoping for that for DS15
  8. Has anyone found anyone who tried this for PANDAS? Any studies? Stories? T.Anna DS15
  9. I hope that we can get better without proper diet since DS eats so few foods : ( T.Anna
  10. Thinking of trying Minocycline on DS15. It is the only antibiotic that we haven't tried. When we went to Dr.N he had mentioned Minocycline and I know that it is supposed to be one that passes the BBB. The thread about Augmentin has gotten me a bit freaked that maybe ill possibly make things worse. Thoughts? DS's cognitive function seems to be improving and he helped his brother last night with Algebra homework, but anything we "think" we see is at glacier speed. We are 3 weeks post IVIG and 5.5 weeks post PEX. Thanks in advance, T.Anna
  11. 10/26/12 ...DS15 received a flu shot. The doctor commented about what great shape he was is in and how muscular his arms were. His brother received a shot and his sister the mist. That was the beginning of our flare. We slid from wrestling meets and high math and biology to a boy who has no muscles and hasn't left the house voluntarily since January 24, 2013. The short answer from my personal experience...no flue shot! Also be aware that some kids react from vaccine shedding if classmates get th live vaccines. Honestly, another pediatrician also told me, you shouldnt vaccinate t
  12. Sklice - is the prescription medication. My pediatrician wouldn't give us a script because she felt we are so "good" at eradicating it the old school way : P In truth DD's daughter was prob. already clean by the time I asked. http://www.sklice.com/
  13. This is a funny thread. We face the craziest lives already, lice cannot scare us!! T.Anna
  14. I do keep a daily journal, but never got around to making it numerical/chart like. I will try to do put it together so that it's more of a spreadsheet. The truth is that overall there have been glimmers, but he is stuck in the bathroom again (his weekly ritual) and it just becomes so depressing. Hoping that we get some answers soon or something try. T.Anna
  15. OK, I have been down this road a few times, at least with three with DD10 who has long thick hair and is a big fan of slumber parties (where lice like to party too). First there are a number of good options for preventing and some good ways to treat. Buy a bottle (amazon) of Fairy Tales Rosemary Repel Leave-In Conditioning Spray 8oz. A friend's daughter uses Coconut conditioner and shampoo and that seems to work too. But I know the fairy tale stuff is good (smells odd and I think they have lavender too now). Spray it in your daughter's hair everyday. Treating: I generally do the "p
  16. We have a phone consult tomorrow. It's 5 weeks post PEX and 2.2 weeks post HD IVIG #3. I know that it is too early to give up on the above therapies. DS has made baby steps, and at the same time huge regressions, in the past week. He has shown that he has amazing ability to share in his brother's happy moments and been a complete jerk ruling the household and his siblings. He has survived the beginning of the high holidays when his life line of two close friends were away, we do not use electronics...instead he read comics, the newspaper and humorous books. We are exhausted. Tomor
  17. Thanks for the link Jill (Dr.K). Very interesting about the teen onset and how they become home bound definitely what happened to us. T.Anna DS15
  18. Dr. Bakhta on radio pandas suggested Alleve on the "Summer Flares" show. Although my drs think Advil is very safe for long term. T.Anna
  19. Anyone have any information on this doctor came highly recommended as helping a friend's friend's child with PANDAS. Please PM if you have any information/experience. TIA T.Anna
  20. It came up twice. The second time my father was behind me and said I was very diplomatic (see, PANDAS has taught me something). Basically, I said thank you, but I am concentrating on the medical aspects of the illness at the moment. That we are hoping that some of the behaviors will subside and then we Willet them know if we need help. Unfortunately, I work with this family member and it came up again today. So I printed the article and he asked to take home a copy : ) Oy!! Maybe I'm heartless, but I was really able to enjoy the celebration and be with close and supportive family &
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