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MMC

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    MMC got a reaction from PowPow in PANDAS physician in Raleigh/Durham, NC area   
    Wow, this is an old post, first one I posted on here in fact on 2009. Brought back some memories, mostly bad, but that's ok. Our son is now 16 and a half. We have seen several doctors over the years. He is currently being treated at Duke by Dr Van Mater (Pediatric-Rheumatology) and Dr Gallantine (Pediatric-Neurology). They combine efforts and expertise to treat kids with autoimmune encephalitis. PANDAS/PANS falls into this category. Duke does not really recognize a PANDAS/PANS diagnosis, but if they can find evidence of an autoimmunue condition that is causing Encephalopathy, they will treat it. Treatments could be IVIG, IV steroids and any number of prescriptions they may use. We have been going there over a year now. Our son is better, but still needs treatment at this time.

    Dr Latimer in Bethesda, MD is an excellent PANDAS/PANS doctor. Start with her, if you need to. She treated our son several years and eventually pointed us to Duke...which is nice since it is only a 50 minute drive for us. We live just North of you. I will also PM you and offer contact information for myself or my wife. Look for this in the messenger inbox at the top right of the Forum. Also, here is a link to the aealliance at Duke...

    https://aealliance.org/
  2. Like
    MMC got a reaction from MaryAW in Autoimmune Encephalities   
    Thanks for posting. I did not read it all, but it encompasses a lot, including PANDAS/PANS. We have seen two doctors at Duke since October 2013, and they have helped DS16 greatly with their treatment, which includes IV steroids and Cellcept. Here is a link to an AE website with a video...
     
    https://aealliance.org/
     
    Also, Duke had an AE Symposium back in June. I live only 50 minutes from Duke, but was unable to attend. There are video clips on the above website from some of the speakers. Dr Latimer always said PANDAS/PANS falls in the AE category and she is the one who referred us to Dr Van Mater and Dr Gallantine at Duke. They are treating a few other PANDAS kids that I know of. They found a blood auto antibody affecting DS16's platelets...causing them to be low...which gave them evidence of an autoimmune problem, supporting an AE diagnosis. All this outside of PANDAS/PANS post strep infectious issues, so it got complicated...but, we are glad they found some evidence to allow treatment. It is a relief to find a team at Duke who understands the issues at hand, and they take insurance of course. We just pay our copays and deductibles, all in BCBS of NC network...no questions asked.
  3. Like
    MMC got a reaction from Rachel in PANS article   
    I just read the article. It's the first time I remember seeing documentation of an autoimmune blood disorder, "We discovered that he actually had an autoimmune disease attacking his blood and blood vessels,” explains Dr. Jennifer Frankovitch".
     
    Sounds similiar to what the docs at Duke found in DS15 end of last year. They found an antibody attacking his platelets. His platelet count was always low and this is why. He always bruised easily. I can't remember the name of the antibody or condition they called it, but kudos to Dr Van mater, Duke pediatric rheumatology for finding it. This antibody gave them the proof they needed for an autoimmune problem. They then prescribed 4 rounds of monthly IV steroids. Steroids worked wonders, so they started cellcept 2 months ago. We continue to see improvements...school is better, personality is back, OCD is lower, ADD is lower. Tics are still there, but less severe. The steroids and cellcept have helped him better than plasmapheresis or IVIG or Abx have.
  4. Like
    MMC got a reaction from ashley in Clonidine?   
    DS15 has taken clonidine at night now for almost 5 years. It has been a life saver, at least a sanity saver. It calms him down (from his tics) and gets him to sleep. He has tried it during the day, but it makes him too sleepy so cannot take it...unless we are on a road trip or something. It has no side effects that we can tell. Dosage for him is a .1 gram tablet, and we sometimes cut it in half if he is doing well. So, its a very small dose.
  5. Like
    MMC got a reaction from EAMom in 19 yr old loses ability to write for one hour..what do you think?   
    This sounds similiar to what happened to the reporter, Serene Branson, when she was on the air reporting from the Grammies a couple of years ago. Its on youtube. Although, it affected her speech instead of writing. She was just speaking gibberish. They thought she had a stroke, but it was diagnosed as a complex migraine. Any migraine history with you or her?
  6. Like
    MMC got a reaction from GraceUnderPressure in Leaving for Colorado - prayer request   
    Glad to hear the good report, Grace...prayers were answered. Amen, qannie47
  7. Like
    MMC got a reaction from GraceUnderPressure in Leaving for Colorado - prayer request   
    I do believe in prayer and the Lord's grace, said one for you and your kids.
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