I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.
Hi! My name is Lily, I’m 23 years old and I have PANS. I’ve been hospitalized so many times I can't even count, seen doctors of practically every specialty recognized in the US, and had nearly every type of medical test run on me. I’ve spent 20 years fighting this, with only 5 years since official diagnosis, but today I’m in remission and this is my story.
I wasn’t actually diagnosed until I was 17, but my parents suspect I’ve had PANS since I first had a flare at 13 months. In the 1990s and early 2000s, PANDAS was only beginning to be researched, so my parents dragged me to doctor after doctor with no answers. The most prominent symptom was a head twitch that occurred after any acute bacterial infection, coupled with severe separation anxiety, episodes of rage and significant OCD tendencies. With no seizure activity and the behavioral symptoms chalked up to personality or growing-up, my symptoms faded in and out with each frequent infection.
After having chronic bronchitis for a year and getting the last of my Gardasil vaccines, I started shaking all over my body. It was the perfect storm. I was a senior in high school and the doctors were at a loss. They gave me Valium to put me to sleep each time I started shaking but offered no solution to the endless tics. I missed more than 45 days of school and desperate for answers, my mom started researching online. Once she found PANDAS, everything fell into place. The diagnosis fit me like a glove and we headed out to my family doctor to confirm and start treatment.
If only it was that easy. The primary care physician was convinced PANDAS, which had just started making the news, was a hoax and instead insisted I was faking it and needed to be sent to the hospital for a psychiatric evaluation. He scolded my mom for “trusting Dr. Google” over his expertise and only agreed to an ASO titer blood test after 30 minutes of begging.
I wonder, do you remember her?
Her name is Justine. She has PANDAS
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
Justine, a now 6-year-old girl, had a very normal life before all of this. She did have 8 cases of strep the year prior so I scheduled an appointment to get her tonsils and adenoids out in April 2016. No one was pushing it, I just thought enough was enough; I scheduled and pushed for it. Much to our surprise at the ENT visit 20 days prior to her surgery, she tested positive for strep. We were given the normal 10-day course of antibiotics and thought nothing of it. She was pretty healthy, had a very high tolerance for pain and did great for the surgery and recovery. Life went on...until 7 months later.
It came on suddenly in November 2016; it changed our daughter, it changed our lives. She was 5 at the time of her onset. We had just returned from a family vacation cruise and a trip to Disney. This is part of her story.
Justine started gradually having frequent urination and some anxiety. I brought her to be tested for an UTI, which was negative. She then changed overnight on November 22, 2016 in Kindergarten. It all started with very OCD and frequent urination with the need to go to the bathroom every few minutes at school. She went 54 times by noon. We had her tested for UTI's a few times in a matter of days. We were told it was behavioral, nothing medical, maybe vaginitis due to a lot of swimming on vacation.
They were wrong. We knew this day we lost our daughter. This was no tantrum; she had a fit of anger, this was a major event-out of character for our daughter at school.
Our daughter changed, you could see it in her eyes, hear it in her voice and actions. She was gone from us. Justine showed signs of separation anxiety and had asked to be driven to school for 2-3 days leading up to this. She had a very difficult time separating from me. Absolutely terrifying. As parents we were not buying that our daughter was starting to act out behaviorally for no reason at age 5. She was a fully functioning happy, energetic, polite, great listener and smart girl. What in the world was going on? Who took her? What took her? What did we do for this to happen? There has to be something medically wrong!
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