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Petes_mom

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Posts 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. 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.

  3. Sorry! I have to get used to the posting...Thanks to everyone for the info. LLM - maybe you've got something there. I have a consult with Dr. T. coming up & I'll ask about those. I know so little at this point & I have learned a LOT (which makes me feel really ignorant before :) Zithromax isn't working as well as Biaxin on symptoms so maybe you're right about the body not handling it. The Biaxin clearly helped certain symptoms very well, but the mental/emotional changes were bad. I'm worried about doing the wrong thing & it's gone on so long I can't do nothing! My DS is desperate & his mind is being affected more & more in the past 2 months - since abx & steroid. His coordination is affected recently. Broke a dish because his hand wouldn't grip it when he thought it would. Knocking over drinks when going to pick them up. And in the AM every day on waking his vision is extremely blurry for the first 20minutes - the vision he says has "always been that way"....but he can't remember before PANDAS/PITAND anymore. Any other suggestions as to what we may be able to look at or test for? Lyme neg. So far every test has been neg. One Autism Spectrum came up inconclusive so we'll redo that. Just did Mitochondria & T cells, Cytokines. We have an appt to see Dr. B in Dec. Thanks so much!

     

     

    Your son's tics sound like what we dealt with. At his worst, DS couldn't hold a glass of milk b/c he'd jerk so severely that milk would go flying across the kitchen. He looked like he was being tasered. He occassionally would "freeze" mid-stride or mid-sentence. He would make the whole table shake if his hands were on it.

     

    Many have found HD IVIG to be very beneficial. We are in the minority where it led to a worsening of symptoms and a very slow recovery. We never saw any benefit, even temporarily. We have lyme as a co-factor, but even so, many lyme families don't seem to struggle with IVIG the way my son did. In his case, he seems to have a very hard time whenever the "cure" gets too aggressive - his body can't seem to get rid of bacterial toxins (from the die-off) fast enough and it produces symptoms worse than the cure. So we need to go slowly and do a lot of liver support. He also has a condition known as pyroluria - a zinc/B6 deficiency. Zinc is the immune system's bullets and B6 is a player in the methylation cycle, which is a precursor to seratonin production and the body's detox pathways.

     

    You may want to ask Dr T about methylation and transsulfuration pathways and get his thoughts on detox. If these systems aren't working properly, you could end up giving your son's body more than it can handle with a HD IVIG. The only reason I mention this is that it's possible that what you saw with the biaxin may not be a reaction to the abx but to the body's struggle to detox the die-off toxins. I know this sounds like a postcard from nut-ville, but I've come to appreciate that in kids who have been ill for a long time, there's probably more than one thing gone awry. Untangling the mess probably requires a slow and steady support program as a precursor to any aggressive treatments. Something to consider while you navigate the IVIG avenue.

  4. Your son's tics sound like what we dealt with. At his worst, DS couldn't hold a glass of milk b/c he'd jerk so severely that milk would go flying across the kitchen. He looked like he was being tasered. He occassionally would "freeze" mid-stride or mid-sentence. He would make the whole table shake if his hands were on it.

     

    Many have found HD IVIG to be very beneficial. We are in the minority where it led to a worsening of symptoms and a very slow recovery. We never saw any benefit, even temporarily. We have lyme as a co-factor, but even so, many lyme families don't seem to struggle with IVIG the way my son did. In his case, he seems to have a very hard time whenever the "cure" gets too aggressive - his body can't seem to get rid of bacterial toxins (from the die-off) fast enough and it produces symptoms worse than the cure. So we need to go slowly and do a lot of liver support. He also has a condition known as pyroluria - a zinc/B6 deficiency. Zinc is the immune system's bullets and B6 is a player in the methylation cycle, which is a precursor to seratonin production and the body's detox pathways.

     

    You may want to ask Dr T about methylation and transsulfuration pathways and get his thoughts on detox. If these systems aren't working properly, you could end up giving your son's body more than it can handle with a HD IVIG. The only reason I mention this is that it's possible that what you saw with the biaxin may not be a reaction to the abx but to the body's struggle to detox the die-off toxins. I know this sounds like a postcard from nut-ville, but I've come to appreciate that in kids who have been ill for a long time, there's probably more than one thing gone awry. Untangling the mess probably requires a slow and steady support program as a precursor to any aggressive treatments. Something to consider while you navigate the IVIG avenue.

  5. 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?

  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

     

    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

  7. 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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