Hannah's Story

My story with chronic illness began in 8th grade. One day I woke up for school and was TERRIFIED. I couldn’t go to school (and wouldn’t), I had a sudden onset of separation anxiety from my mom, would use “baby talk” or age regress, have tantrums/blackouts (which I now know are PANDAS rages, will explain later!), would go to the nurses offices and request to go home everyday (or make them send me home), have panic attacks (usually in the bathroom at school), smell OCD (applied deodorant over 100 times to each arm), I was all of a sudden not myself; my family and I were confused and scared, rightfully so. I was refusing to go to school for so long due to being so afraid despite everyone’s best efforts to help figure this out, the school I went to at the time had come to label me as defiant and went about my situation all wrong. At one point I ran away from school to get to my mom (I lived close, I made it home and beat them (they were traveling by car btw, yeah I’m fast)) since they wouldn’t let me see or call her (and locked me in a room because I was freaking out since I couldn’t do the previous) they then said if I didn’t attend a school refusal program I couldn’t go back to my school. I suck it up and do the program (it didn’t help, shocker) and go back to school— same issues still happening. What the heck.

 

Fast forward a few weeks, my wonderful mom (r.i.p) joined a few Facebook groups for parents of children with anxiety, asking questions and seeing if anybody had symptoms like mine. A woman in one of her groups reached out and asked her, “have you ever heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, what it stands for) before?” and my mom, having no clue at the time what it was, inquired more about it. She researched it more, and my symptoms were almost spot on with a typical PANDAS episode, however, PANDAS isn’t widely accepted in the medical community yet, and not every doctor “believes” in PANDAS. Let me tell you, those doctor’s visits are so fun! Anyways, I’m from Illinois, and there are only 3 PANDAS doctors in the state. My mom emailed one with my symptoms and asked if he thought I had PANDAS and should be seen (he did), so we then began the treatment process.

 

The treatment process was long and exhausting (but worth it entirely), there were many moving parts and pieces that worked together. It was also my first time dealing with this, so I was learning as I went as well, figuring out what my body tolerated and what it didn’t, etc. My doctor first scheduled me for an IVIG treatment (a plasma transfusion) that was 6 hours a day for 2-3 days. The hospital gave me IV Benadryl as a premed so I honestly slept or was watching Netflix. The initial experience wasn’t horrible. The only thing about IVIG is that it takes one full year to take effect, and even then, you may need more than one treatment. It also was not covered by my insurance, BUT we fought and got it appealed, and now IL has passed Charlie’s Law (yay)! After my infusion, I was tired, my body was adjusting, and I was just tired from being in and out of a hospital setting. My doctor also started me on a high dose of antibiotics for a long period of time, PANDAS is caused by a misfired strep infection which then causes swelling in the brain and causes the symptoms of anxiety, OCD, depression, rages, etc. the long term antibiotics were used to treat the symptoms of the strep infection. My strep infection was not typical either—it was from a double inner ear infection I had gotten around 7 months prior to my symptom start date (it had gotten misdiagnosed as an outer ear infection, and I lost 70% of my hearing as well (but gained it back)). These two medical interventions from my PANDAS doctor, as well as therapy and an SSRI, helped get me in the right direction. I do have “flares” whenever I get sick, my symptoms increase, but as I’ve gotten older and had to deal with this illness longer, I’ve gotten a better handle on it.

 

I am happy to say though that I’ve been in remission and only needed one IVIG treatment. There were moments where I almost needed another one, but the symptoms subsided and weren’t longstanding. Losing my mom my senior year of high school definitely brought up feelings of anxiety for me. I felt my symptoms creep back, but it was now my job to take care of it since she could no longer. After working hard in therapy for years in middle school/high school, taking a break from it, and now in it again during undergrad, I’m proud of the progress I’ve made. I did not think I would finish 8th grade, let alone be in my senior year at Iowa and graduating in December. I owe it to my family but also to myself. Chronic illness takes so much out of a person mentally and physically, but it should never interfere with your dreams. Chronic Illness sucks, respectfully.