Starting age 6, I got strep throat for the first time. Started off being nothing out of the ordinary, but by age 8 I would have strep throat 80% of the time. Doctors would just give me antibiotics send me my way and within 3 weeks I'd be back in there office with strep again. Aggravating, but nothing too terrible until one day I woke up screaming in my bed. My mom said I looked possessed and was saying words and sentences that just did not make sense. She took my temperature and it was 106.9 degrees. I remember hallucinating seeing demons and the world did not look like the world. My mom managed to cool me down with wet wash clothes and returned me back to normal. So now every time I would get strep, I would also get high fevers and become delirious. This happened for about 2 months when one night I was spending the night at one of my friends house and I thought I was going to become delirious. Turns out this time, I did not have a fever, but I knew something was not right. Walking back into my friend's bedroom, I collapsed on the floor and had my first seizure. Overnight after the seizure, I started having eye twitching and neck cracking tics. Things kept getting worse and worse until I was diagnosed with Tourettes Syndrome and OCD about 4 moths after the seizure. I had loud vocal tics which sounded like a fire alarm and dolphin noises (you know the teachers loved me haha). My OCD symptoms were liking to touch my joints such has the inside of my knuckles, elbows, and knees. Also my smell became much more sensitive. If I didn't like a certain smell, I could not get near it without gagging. So around age 9 all the doctors were wanting me to try medication that could or could not have helped. My mom and I decided we weren't going to mess with medicine since none of it was actually proven to be effective at the time (I think this was in 2003). My mom was doing research on the internet when she stumbled upon an article explaining how there was a theory that streptococcus could cause Tourettes and all sorts of other stuff. We went to the doctors with this information and none of them took it seriously. To them PANDAS was just nonsense.
So instead of medication, I started seeing this great Psychologist who helped me find ways to ease my tics and compulsions. She helped me find ways to relax when tics were flaring up or in situations where I could receive public scorn. Meanwhile, I was still attending public school and my grades were dropping. Before PANDAS I was incredibly good at math and then it was like my brain just turned off the ability for me to do it. Everything that was happening, I could notice. I had extreme self awareness which really helped out when I explained my situation to others. Peoples jaws would drop when a 9 year old would explain to them that I had Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. Because of good friends who would back me up, no one ever bothered me about my tics or compulsions at school except for substitute teachers.
My mom and I eventually decided to visit an Ear, Nose, and Throat specialist who wanted to get rid my chronic strep throat. He could see that my tonsils were full of bacteria and said we should remove them and my adenoids. I got them removed and all of my Tourettes and OCD started to decrease. When a year you couldn't even tell l had Tourettes or OCD and it remains the same way to this day. Everything took time, but everything I lost to the PANDAS came back including my math abilities. To this day I have not had a single case of strep throat again and I have only one or two tics that come only during stressful times such as exams and even then only last for literally minutes. Certain sicknesses can trigger tics also. For example if I have a runny nose, I will develop a small nose twitch tic.
I never took any medications, supplements, IVIG, or anything. Just had my tonsillectomy and found ways to relax my tics/compulsions.
