Everything posted by chadzilla333
After getting my tonsils and adenoids removed, I had PANDAS behaviors for about 1 and half more years, but the severity of it decreased consistently throughout that time. If you wouldn't mind could you send me the link the the Facebook group for kids with PANDAS? I tried to search for it, but can't seem to find it. As a kid going through PANDAS, there were some points where I questioned why I was living. I asked my mom once or twice why God would make me suffer through this. It wasn't until one night I went to a Good Friday service at my church where I walked out understanding that I rather than looking at PANDAS as such a burden, maybe I could turn it around and be able to help others. The easiest way to explain to someone what it was like living with PANDAS is that there are metaphorically two 'people' inside of you. For parents of kids with PANDAS, there is your child who you know (soul) and there is their brain which is a separate entity. Unfortunately, the brain overrules the soul commanding your body to do certain acts the soul does not want to do. That's how I always explained it to people so they could understand a little bit more. It was a constant battle of 'who' is in control.
In my opinion, the majority of the medical community just doesn't know what to do let alone recognize PANDAS as a real thing. If PANDAS is simply the antibodies attacking the brain instead of the bacteria, then theoretically removing the antibodies or the bacteria causing the antibodies to react would stop the 'attacks' on the brain. It's such a shame that the medical community doesn't put more research into this. Please though, if any of you have any questions don't hesitate to message me. I want people to be able to pick through my brain to find out ways to help others. Plus I love hearing about other peoples cases.
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.
I had PANDAS
chadzilla333 posted a topic in PANS / PANDAS (Lyme included)Hey everyone. My name is Chad and I'm 20 years old, currently studying to be a Civil Engineer. When PANDAS was affecting me I was diagnosed with Tourettes Syndrome and OCD. PANDAS affected me from ages 8 to 12 and ever since then I am essentially "cured" except for a few movement tics that no one even notices. I am new to these forums and saw that it was mostly parents on here so I decided to join in case anyone wants to ask me any questions about my experience with PANDAS from my brain's point of view.