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Everything posted by Petes_mom

  1. Dr. T is great but very overworked & understaffed. It's so hard for us because we all need help for our kids & I know from our experience with Dr. T. - he really cares about his patients but can't possibly do so much for so many all the time. If you can tolerate the periods of waiting he is a good doc. And if you set up a phone consult (there will be a fee) you will surely get your money's worth. I figured out after a while that I need consults every so often to go over where we are at & new changes that we have to adjust for. I think that varies from person to person as to how much contact you need. Whenever I would get frustrated I reminded myself how many docs we had been through that NEVER got on the phone Good luck!
  2. LLM - One other question. What is HD IVIG? I've only seen it called IVIG. Is the HD something different? Thanks.
  3. So far we haven't found a specific immune deficiency condition, but I think that's what we're still looking for among other things. He's always has terrible immunity & 1 category in T cells looked bad which is why we did the last tests. This is the strangest thing & it seems like there are so many options of what could be wrong.
  4. We've been working with Dr. Trifiletti in NJ since August, my son appears to be a very extreme case or have something else co-existing. Oh, and thanks to everyone who answered me! I will look into what you've given me here. We did Biaxin 2000mg/day for 3 wks but had to stop because Pete was having terrible emotional distress (an uncommon but documented side effect). Then we tried just Prednisone short burst for 5 days 100mg/day. That worked VERY well but only for about 4 days (didn't see any improvement until the 10th - 12th day after the start date of the Pred.) Then we tried again with the Biaxin together with Prednisone - supposed to be for a month but he only lasted a week due to the Biaxin side effect again & the Pred that time seemed to be making him feel sick. It was 100mg for 1week then supposed to taper down over a month. Anyway our son seems to have T cell issues - doing more testing now along with a mitochondria test. He has extremely severe muscle spasms - it looks almost like someone is electrocuting him or "zapping" him with some kind of remote control, constant feeling of fear, vocal tics, unable to sleep, had very extreme intrusive thoughts constantly for about 2 years, his memory & math, handwriting & overall cognitive function are becoming more affected all the time, vision disturbances, he's unable to attend school & he used to be very good in school. This started in 2006 when he was 8. He's now 13, 5'10" & 200lbs. so IVIG will cost us a LOT if we have to go out of state but he's suffering so much I feel like we have to try before he gets much older if the age factor is true. Even if it helped a percentage of his symptoms it would be a relief. Sorry for the rambling! Does anyone have opinions/experiences re: IVIG?
  5. Welcome to the forum. It sounds like you have been traveling a long road to get here. I am wondering if you have a PANDAS doctor that you are working with at all. You mention that you have to stay in NY State. I've heard good things about Dr. Eric Hollander, though I do not know if he provides IVIG. It sounds like you are pretty set on IVIG and I am going to assume that you have already tried other methods or you know that your son has immune deficiency. Dr. Hollander's address is: PANDAS Center 901 Fifth Avenue New York, NY 10024 212-873-4051 ericholl@optonline.net Academic Affiliation: Albert Einstein College of Medicine and Montefiore Medical Center
  6. Hi! I'm new here & my son has finally been diagnosed with PANDAS/PITAND (after 5 yrs of misdiagnosis). We are trying to get him IVIG & having no success locally. The only way our ins will cover it is in NY State. I'm curious if anyone has had success getting IVIG on or near Long Island? Our son is 13 so we're also concerned about the age "window" of under 16 being optimal as mentioned by Dr.K on his site. Any info is greatly appreciated
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