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About melanie

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    Advanced Member
  • Birthday 12/26/1966

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    Danny is doing IVIG every 21 days at home with a Nurse at 1 g per Kilo.we completed 5 rounds of PEX November 2011 He is 18 now looking forward to his future.

Recent Profile Visitors

10,121 profile views
  1. Vayarin ?

    I've been reading about vayarin. Seems pretty good. Any one use it ? Good or bad. Thanks. Melanie
  2. hello

    its been a while since ive posted things are ok still having behavioral issues dannys going to be 21 soon and that is a whole new world Hes on depakote and gabapentin and namenda till doing ivig every21 days im feeling defeated somedays ,and hopeful others. Anyone have any cure yet??? melanie
  3. B-12 shots

    Just gave danny his first B12 injection. Anyone else doing this? Melanie
  4. Dan had a positive lyme test (I think) It says positive :5 of the following Borrelia -specific bands:18,23,28,30,39,41,45,58,66,and 93 Then it says under that Negative No bands or banding patterns which do not meet the criteria What does this mean???
  5. Blood results

    Does anyone know if Ivig interferes with blood work??
  6. Dan gets ivig every 21 days for 3+ yrs. blood work came back and lots of concerns. How much of the blood work infections are due to ivig is it reliable due yo the infusions
  7. what do i do about cursing

    Please ,please listen to me. Get a very,very good behaviorist to work with you and your family. I spent thousands and years on this. Been to every dr ,clinic etc. I don't know if any parent has been though what we did. You can absolute pm me if you have any questions. Melanie
  8. Eye rubbing

    Do you think eye rubbing is always allergy related ?
  9. Going to see dr T tomorrow

    GL. Can you please send me that link. Please. Thank you Melanie
  10. We've been at this PANDAS thing for 8 years. I have known dr T for most of these years. We have several doctors and Danny receives Ivig every 21 days and has for almost 4 years. He's 20 and is doing way way way better than 1 yr ago. I'm going to see him ( dr t) to see if he can help move Danny along. I know there's so much info I don't understand. I know we're missing stuff. I want like all of us to be" cured". If you can give me advice of tests or questions to ask him I would really really appreciate it. Thank you Melanie
  11. Hystimine

    What can I use safely to increase histamine. He has used Benadryl in the past. Thanks
  12. Hystimine

    Can some one please explain the hystimine process with Tourette's. PLEASE. Do I need more or less. I just completed reading 2 papers and still I don't understand if he has to much or not enough. Thanks Melanie
  13. Hi. He's been on minocycline. Does well for a while then back to the same. Still way way better than a few years ago but still has processing and anger issues. I keep reading about clyndimicin? Help. Melanie.
  14. Nystatin

    Dan ,20 yrs old 10 day corse of nystatin. Dr gave him refills finished 1st cycle. Should I continue. I don't see anything bad. I hear I will. Is that true?
  15. Dr Harumi Jyonouchi

    We have been using dr j for 4 years. . Pm if u need info. Love her.