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About melanie

  • 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.

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  1. Can we talk more about cellcept Anyone?? were 250 x times daily right now
  2. Noticing a lot of this lately Anyone else .(We use IVIG every 21 days )
  3. Recently dx with TMJ Any one know a dr in NJ area who treats under DR Stack?
  4. I've been reading about vayarin. Seems pretty good. Any one use it ? Good or bad. Thanks. Melanie
  5. 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
  6. Just gave danny his first B12 injection. Anyone else doing this? Melanie
  7. 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???
  8. Does anyone know if Ivig interferes with blood work??
  9. 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
  10. 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
  11. Do you think eye rubbing is always allergy related ?
  12. GL. Can you please send me that link. Please. Thank you Melanie
  13. 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
  14. What can I use safely to increase histamine. He has used Benadryl in the past. Thanks
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