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Everything posted by rhyanen

  1. Can anyone tell me what the difference is between the two, or are they basically the same thing? Has anyone's child been diagnosed with Anti-NMDA receptor encephalitis via CSF analysis? After reading about this type of encephalitis, the similarities are striking!
  2. I guess what I meant was, if insurance isn't paying for it, how does a person get the funds to just drop down $10,000, $20,000+ on treatment? Especially if you are poor or middle class? Do you take out loans? Sell your car? How do you get the money? Are you wealthy?
  3. How does one pay for IVIG? Especially if insurance refuses to cover it? Does it have to be paid up front in full? Any information would be greatly appreciated. Thanks in advance.
  4. Hi we drove from a neighboring state so that my 16 year old son could be seen there in the hopes of getting IVIG.. He already had a diagnosis from another physician in AZ, but this was just to confirm it. Staff was ok. I think they are not quite as knowledgeable as I had hoped. RX for antibiotics...yet again. Steroids caused an increase in tics. Was discontinued. I was hoping he would see the sleep specialist and nutritionist as his sleep schedule is a mess and he has limited food intake...he's only 117lbs and 6'1". Please send me a private message and I can give you a more detailed response.
  5. Thank you! That makes me feel validated because I had been reading alot on Lyme and the confection connection and when he told me that he couldn't have it, I was pretty shocked. The first specislist he saw diagnosed him with PANS/PANDAS. She told us specifically that he needed to see a Lyme specialist based on the results of the Western Blot. Several months prior to that appointment, we were camping in Colorado and my son was feeding wild chipmunks and squirrels. 3 months later, he develops symptoms, can no longer function, or go to school, etc etc. The worst exacerbation we had seen. He had not been diagnosed yet when all this occurred. After coming across information about PANS and Lyme, it prompted us to seek the opinion of a specialist in AZ. But we reside in New Mexico. We've been having to travel to AZ for appointments as New Mexico is not up to date yet regarding autoimmine encephalopathy.
  6. Thank you so much for the response. He has been through a host of testing and came back showing mycoplasma, coxsackie, HHV-6, and western blot positive for 3 bands. Immunologist says he does not have Lyme because he does not have 5 bands per CDC guidelines, which I am skeptical about his opinion on that. Currently strep antibodies are negative, but have been positive in the past. He's been suffering through this for a good 14 years. He was diagnosed with high functioning autism at age 3, so for years we just assumed it was that. But we started noticing a pattern with illness, and each time resulting in some serious regression. He is now 16 years old and cannot go to school anymore nor leave the home. His last big exacerbation was it 14 years old, during which time he had a psychotic episode. His cognition has declined by 15 points on his IQ test. He has become severely disabled by this and can barely communicate anything. It's devastating because he was on an honor roll student in between his flare-ups and had several friends. Now he is homebound and a social. I will contact his immunologist and his pediatrician regarding his reaction to the steroid and hopefully they will have some thoughts.
  7. Hi everyone. My son's immunologist just prescribed 50mg prednisone for 5 days to take down inflammation. 2 days in, his verbal tics have increased to where they have become incessant. He has also started a new tic where he violently shakes his head back and forth all while having the verbal tics. Is this a normal response to steroids? This is his first steroid treatment. Before he just took Nsaids for inflammation. Thanks Amy
  8. Hi. My ds is 16 and I've noticed that he tends to get migraines often in the beginning of his flares, which tend to taper off with time. Does anyone notice this in their child during a flare?
  9. Hi. My 16 year old ds seems to have migraines often at the beginning of his flares, which tend to subside as time goes on. Have any of you noticed this pattern in your children during flares?
  10. Hi, I take my son to Dr. A in Phoenix and am searching to find others that also see her for treatment. I have a few questions. Please PM me. Thanks! Amy
  11. Hi, son is newly diagnosed and I am looking to connect with other PANDAS/PANS parents in New Mexico. Please respond or feel fee to send me a message. Thanks! Amy
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