My Story - PANS Project
The month of August has always been a month of celebrations, trips, parties, and friends. August 2009 was no different – A trip to Camden Yards, a visit with the Orioles in their clubhouse, a meet and greet on the field with Red Sox, a game of wiffle ball with Orioles mascot on field in front of fans, a camping trip with friends, a deep sea fishing trip, an amazing party with friends, family, and new neighbors. I always had friends laughing and hanging without any anxiety. I was excited for school, alert, outgoing, and absolutely no behavior issues or anxiety.
September 2009 - I missed the first week of school because I had strep throat and an ear infection.
October 2009 – I had H1N1 and was quarantined – it was very scary.
November 2009 – I was required to get the H1N1 vaccine to return to school.
December 2009 – Symptoms started to appear. Gazed look, large pupils, blank stare, no expression, pale coloring, puffiness, sleepiness, anxiety.
February 2010 – After my first Grand Mal Seizure - The beginning of tests. EEG, CAT Scans, MRI, Spinal Tap.
Summer 2012 – A game of baseball, once a favorite pastime, now took hours to prepare to play. My medicine (27 pills a day) had to be timed perfectly to get thru a game, if possible. Thanks to the patience of my coaches, there were many times I sat on the bench unable to play, but his coaches involved him in other ways.
November 2012 – After almost 3 years of tests, hospital stays, and doctor visits without much answers, my mom found a doctor in NJ that one of her clients recommended. We drove 5 hours to his office – within 15 minutes he told my mom “I can get your son back – he has PANDAS – he is a classic case”. WHAT IS PANDAS? It stands for Pediatric Autoimmune Neuropsychiatric Disorder associated with Strep. You may get Strep Throat, I get Strep brain. My onset was acute and debilitating in 2010. Doctors did not know what was wrong with me so they kept giving me more pills to take – I once. After A LOT of blood work it was confirmed I had a combination of PANDAS/PANS – which means my immune system acts differently when it is fighting bacteria life strep or a virus like H1N1. After treatment of a large dose of antibiotics and steroids – within a month we all noticed a difference in my lifestyle – I wanted to hang with friends again, play ball, be normal. I stayed on this treatment for a few months while I was weaned off all the wrong pills. I still take SSRIs for anxiety and continue Cognitive and Exposure therapy – while in remission I am just a typical teen with some anxiety. When my immune system is fighting anything, even allergies – my anxiety and OCD are the first things we notice. In January 2014 – I had my first and only major flare since diagnosis where I was unable to function, attend school or sports – it was a GIANT step back. Knowing what it was and knowing how to treat it made it less scary. I woke up feeling tired but “normal” on Saturday – hung with friends, played basketball… then WHAM on Sunday I woke up a different person. I couldn’t write, act, talk, eat, or get up. My mom immediately started treatment again and within a few days I started to improve although I missed a lot of school and activities. The doctor said this is common because there is so much sickness in December/January/February.
January 2014 – Flare – I couldn’t write my name or anything. If there is another Flare I will have similar symptoms and not be able to attend school. Generally, my seizures are absence seizures which is me staring and not responding – once the seizure is over I may be confused and unable to focus. Whether I am in a flare or not, I still suffer from anxiety. My anxiety can caused me to act silly – like most, I am a flight or fight responder… which means I will either quickly leave a situation that is causing me anxiety (like a class discussion) or I will argue and “fight” (not physically) about the situation. My eyes, especially pupils will become very large and I will have a blank look in my eyes (I am NOT high – this is a reaction). This is not contagious – it is an immune deficiency that I was born with. How can you help? If I miss school, know that I am doing school work with a tutor at a different location – I am not on a vacation. If you see me “zone-out” – most likely it is an absence seizure, I am not ignoring you and will be ok in less than a minute. When my anxiety is peaked, I prefer not to be touched – just let me know that everything is going to be ok.
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