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  1. 1 point
    Many of us get caught up in a diagnosis name. I think we got lucky with a pediatrician that understood what we would struggle with in the medical industry if she diagnosed our child with pandas which at that time was concidered very rare. She made a diagnosis of “unknown autoimmune illness” in 2012. the result being we did not experience testing or treatment denials from our insurance. Example: getting an mri. Symptoms vary in intensity. We thought at first that DD did not have a tic but later realized her tic was verbal. Her tic also changed with a steroid blast treatment from verbal to head shaking. Having no experience with Pandas symptoms makes it hard to define or recognize symptoms. We think the underlying cause of antibody and protein build up in the Basal ganglia. we did eventually get a pandas diagnosis in 2015.
  2. 1 point
    I think it depends on your age. I have had two episodes of PANDAS in my life. First was when I was 11 years old. Sudden vocal repetitions of phrases when spoken to and lots of hand washing OCD. I was a happy, not anxious, middle schooler and I felt mostly normal - I just had these vocal tics and OCD. I went to school but made accommodations with my teachers not to call on me in class and my parents explained to my friends what was going on. This went away slowly with 6 months of antibiotics and I was in remission for 10 years. I went on to be a recruited division 1 athlete at a top 5 university and was happy, popular, and felt like the luckiest person in the world. I thought I was done with PANDAS. Now I am in my early 20s and battling a much stronger PANDAS/PANS relapse. I have no tics or OCD at all just debilitating social anxiety, depression and obsessive thoughts/worries (which are actually considered a form of OCD) that came out of nowhere three years ago and slowly built up in intensity until I had to leave college. This time around has been more challenging as Lyme and co-infections are involved and I haven't gotten better yet after a year of antibiotics. I think older PANDAS patients experience more amygdala-based inflammation (mood/anxiety issues) whereas kids experience more basal ganglia-based inflammation (tics/OCD). Just my two cents.


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