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putting together the piece

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putting together the piece last won the day on July 11 2015

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  1. Just had Aboulia mentioned at our last neurology appointment. Doc. postulates that there is now frontal lobe dysfunction caused by prior PANDAS. Having a brain MRI on Friday. If you ever got further information on the subject please share it. Thanks
  2. My Pans son had dissociation for years. Turned out he had Lyme disease. Treatment lasted 3 years. Symptoms slowly began to resolve (including the dilated pupils.) He is much improved now but it was a very long road using multiple abx simultaneously for the 3 years. You might want to seek out an LLMD for a rule in/out.
  3. We used it for awhile (2 years) seemed to help.
  4. Hi, I have seen both anorexia and binge eating with PANS/PANDAS. The binge eating occurred while receiving hd ivig. It was crazy. Anorexia occurred at another time. Minocycline addressed the anorexia so I figure that was infection triggered. I suspect when eating is affected the hypothalamus is inflamed. Try to figure out what could be causing the inflammation and perhaps address it that way.
  5. Hello, My older DS tested negative via INGENEX the first time we tested. He had been sick a very long time and was not making antibodies against Lyme anymore at all. His brother was CDC positive as was I. We tried provocation (1 month on antibiotics for Lyme) then retested. Results was CDC positive. His body needed the antibiotics to help him make antibodies against the Lyme. Please google provocation for Lyme testing for a better understanding. Good Luck.
  6. I had good success with my two boys using Dr Garabedian, 491 Allendale Rd #222 King of Prussia , Pa.19406 610-265-0500
  7. When my son had his first ivig there was no after flare. However after his second ivig he had what is referred to as a turning back of the pages. That flare lasted a pretty long time and I began to doubt whether he should have had the second ivig. It finally ended and he was better off than he had been prior to the second treatment. Hang in there!
  8. Sounds like an underlying infection weakening the immune system and allowing everything to hit him hard. Did you check for Lyme?
  9. Check for Lyme and its co-infection Babsesia. Ingenex lab is best. Provocation very helpful before hand.
  10. For what it is worth, both my boys have been on the LDI for Lyme for a year now and that has proved to be beneficial. Last month they started the LDI for strep. We had 1.5 days of disrupted behavior and then things evened out. I am hoping to see good results from this as well. We started at a very low dose of 7 parts per million.
  11. Hi, Both my ds's had strange symptoms which distorted their ability to understand where their own body was in space. Although not the same as your child's experiance exactly, it was similar enough for me to wonder if your child has Lyme diseaese. Both my boys do and these very strange symptoms have begun to resolve with treatment.
  12. For my 10 yo he must wear long sleeves and pants to school even on days when temperatures near 100 degrees. While there is no air conditioning in his school and he is extremely hot his fear of germs will not let him go without the added protection of long sleeves and pants. Last year he had to wear 3 shirts the entire year so I guess we are making progress but omg! this ocd is rough.
  13. Hello Everyone, Our school district is allowing me to educate the staff on PANDAS/PANS. When I speak about OCD I am afraid all they will be thinking about is complusive hand wasing and lining up toys, but I know that OCD manifests itself in many, many ways with our kids. Please help me give some very real examples so I can help educate and spread the word. Thank you!
  14. Not sure about other testing but if you suspect congentital Lyme please consider provoking with at least 30 days of antibiotics prior to Ingenex testing. My kids were congenital Lyme and their systems were so weak from having been sick for so long that their first tests were negative with some indeterminate bands. After provoking with abx for 30days they were both CDC psitive. Could have saved myself the cost of that second test if I had known in advance.
  15. Have the same script here for use with blood draws and iv's. Only used it once. Didn't seem to be that great. May have something to do with the MTHFR mutations or some other reason it wasn't metabalized the way my body would have metabolized it. I haven't bother to use it again.
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