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kristin0713

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  1. My DD was diagnosed with PANS in February 2017, it was triggered the summer before in 2016 by coxsackie and then influenza in the winter, which was what pushed her over the edge. She presented with the full list of PANS symptoms in 2017 and has recovered I'd say about 90%. Recent bloodwork showed extremely high measles titers - 273. Has anyone else seen this in your PANS/PANDAS child that is NOT on the spectrum? Our ABA therapist, who we hired to help DD work through OCD and anxiety related to PANS, has noticed other behaviors that she sees in children on the spectrum. This was
  2. My PANS daughter sees Dr. Jyanouchi at St. Peter's in New Brunswick. She's been WONDERFUL and her treatment worked very well for my DD. There is also Dr. Trifiletti in Ramsey.
  3. Yeah I know it's scary, believe me I am distraught over even considering this. I watched my 11yo daughter change from healthy and typical to completely anorexic, withdrawn, plagued by OCD, terrified to leave my side, and having urinary accidents within days of getting the flu. I also watched my son become basically paralyzed and in excruciating pain from myositis as a complication with the flu, needed to have him hospitalized and later transferred to a higher level hospital all while DD was in the thick of her PANS symptoms. I only very selectively vaxed my kids and spread them out. I hate
  4. If your child sees one of the leading PANS/PANDAS doctors, do they recommend the flu shot? I'm not looking for opinions, I want to know the consensus among the leading doctors. My personal opinion has always been NO flu shot. But my daughter's immunologist highly recommends it for her. She is very pro-vaccine to begin with, and influenza was what sent my daughter into full blown PANS symptoms last year. To top it off, my son was hospitalized with complications from influenza (myositis) last year as we were battling DD's PANS. DD's doctor has been amazing and I feel like she has saved
  5. I messaged both of you. We have an appointment with her next week and I want to make sure we are seeing the correct Dr. J and that she is very thorough??
  6. Hello, I am newly dealing with (I think) PANDAS/PANS in my 11 year old. We have an appointment with Dr. Jyonouchi for March 13th. In the meantime, I don't know how to handle her resistance to doing school work. We have always homeschooled and she is (was) a good student, strong reader and writer, on grade level for math. A few weeks ago, following influenza, she went into a serious depression, was withdrawn, wouldn't eat, and exhibited all sort of bizarre OCD behaviors and tics. She has mostly come out of that but is still showing some lingering OCD behaviors such as getting upset that
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