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Everything posted by momofthree

  1. We are finally going to be getting IVIG next week with Dr. L. I am wondering how long you kept your child out of school after the infusion, and if so for how long. I am still waiting to hear back from dr.'s office with regards to some questions about the upcoming procedure. Also, within even your own household, did you keep them somewhat secluded? I am worried with our families' strep and illness history that my other 2 children might pass something along. I know we can not keep them in a bubble, but just wondering how you all went about it. And any suggestions regarding first IVIG are a
  2. You have no idea how perfect your timing with your post was for me. Thank you. I would love to hear more about how you have "recovered" your dd. Thank you
  3. thank you 911m. His bun is usually high, but the Bun/Creatine Ratio seems to have even more elevated numbers. The tests have usually been through lab corp, and it just states BUN/Creatine Ratio with a number. Each blood draw he has been consecutively abnormal, beginning with 26 in JUly 2012, to this past September with 37. I am curious to what that might indicate as it has never been in normal range. Powpow- thank you. May I ask which PANS neuro you used? Were you able to get IVIG covered and how was Encephalitis diagnosed? Dr J thinks DS has autoimmune Encephelapothy, but again, bu
  4. Also, his BUN/CREATINE level has continued to rise consistentally with each test,abnormally higher each time. starting at 27 for first test, to 37 for last. any idea what that means?
  5. I apologize ahead of time for the long post. I have been a long time reader/researcher on this great forum, but this is my first post.It's so hard to be both the 3-ring circus leader and Sherlock Holmes at the same time, and I am feeling lost and worried- so I could use some of your guidance. I will try to give you brief history up to this point. I had a very long road to discovery of PANDAS/PANS with DS8. Though he was a healthy and happy baby, at around 18mos he would have repetitive strep- he also seemed to speak less or lose speech. The big culminating episode that is forever etched
  6. I have been a constant reader and researcher on this wonderful forum, but this is my first post. I will give a quick,(I'll try)abreviated history. DS8 was a happy healthy baby, with an easy, sweet disposition. At around 18 months he started to get repetetive strep infections. I also about this time rehen he was about 2 and 1/2, I got call from his daycare, he was stubling and couldnt walk straight. Immed took him to ped, who had him walk up and down hall looking like a drunken sailor. Sure enough,had strep. We were leaving for family visit to SF on plane, and voiced my concern about never er
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