Jordan's PANDAS Journey

Hi, my name is Jordan. The photo is me at 5 years old, a few months after my first strep throat infection.  After my tonsils were removed a few years later, I still got strep but not as much. Antibiotics would always help. But two years ago, something went terribly wrong.

During the summer of 2017, I thought I had strep again, but the throat swab at my doctor's office was surprisingly negative. In September 2017, almost two months later, I was diagnosed with P.A.N.D.A.S. or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep (streptococcal infections). It happens when strep triggers a misdirected immune response and results in inflammation inside a child’s brain. The symptoms can start very suddenly and they change a child’s life. I began having aches and pains, movement and vocal tics, really awful headaches, dizziness, and nose bleeds. I started struggling to write straight and I couldn’t write letters correctly no matter how hard I concentrated. I felt really scared and anxious, especially when my mom was not near me. I did not want to sleep alone. It took me hours to do simple things. I started thinking that people, places and objects had dangerous germs. This was not me! I was always independent, outgoing, adventurous and I did good in school. I knew I was changing and things kept getting worse.

After going to the emergency room for the second time, I was admitted to the children's hospital in September 2017. My mom and I stayed there for over a month. The doctors worked hard to figure out what was wrong with me. After the first week of many shots and tests, the doctors had a big meeting and diagnosed me with P.A.N.D.A.S. I was 13 years old and finally learned why I was feeling and acting so differently. My immune system was trying to fight the strep infection from July to September. It was making me very ill, especially my brain.  

Since the diagnosis, I’ve seen lots of specialists. I’ve had good days and setbacks. My immune system is not back to normal yet, and inflammation is still messing with my brain. After traveling to the University of Florida to meet my P.A.N.D.A.S specialist in January last year, for the first time in a while I felt helped. I felt hopeful and excited about the future, but unfortunately about two months into my treatment my doctor in Florida went on an extended medical leave, and she still hasn’t returned. Bummer, right? Dr. Murphy has helped lots of kids with PANDAS. I hope she gets better soon. 

To make matters worse, my local neurologist relocated out of state earlier this year. My care suffered without them. On the bright side, I have a new team since this spring and I’m making strides again. I thank God I'm much better than I was before the diagnosis and my first IVIG back in 2017, but I still have an uphill battle to full recovery. Oh, an IVIG is an infusion of healthy antibodies taken from the blood of donors. The nurses put a needle in my arm to connect the infusion. It takes two days and goes really slow. I really don’t like the infusion. I usually vomit and get a terrible headache that last days after I leave the hospital. My mom says I’ve been really strong and courageous.

Lots of my friends don't come around anymore. Well, except my two best buddies. They’ve been my friends through everything! Their first names start with J like mine. Another great friend “O” comes over sometimes too. He and I like playing Minecraft on the weekends. Sometimes I act differently around my friends. I can’t help the movement tics and headaches. At times, I stop talking. They don’t make me feel ashamed or embarrassed. They make me laugh and feel like myself. They make me feel like the me before P.A.N.D.A.S. One of the Js visits all the time and plays video games with me during my infusions in the hospital. Our children’s hospital has Xbox consoles with games we like.

Until my immune system is stronger and the brain inflammation is under control, I can't return to school or my lacrosse team. Before PANDAS, I was a very active kid. I loved sports, the outdoors, swimming at the YMCA, being with my family and hanging out with my friends. I liked my guitar lessons, cutting grass in my neighborhood, riding my BMX and UTV. I also like building go-karts. PANDAS changed my world overnight. Now I spend my days mostly managing compulsive symptoms, tics, getting through my at-home sessions with my school teachers, going to doctor appointments, taking medicine, and getting painful shots.

So why did I start this post? 
P.A.N.D.A.S. is very expensive and there aren't many P.A.N.D.A.S. specialists. Most families fighting PANDAS have to travel out of town to see specialists. Many don’t take health insurance and each visit is expensive. I have to take lots of medications and supplements. One is an expensive mixture that's also not covered by our insurance. I have to do more genetic and immune tests. There's lots to pay for when a kid has PANDAS.  Our house has to be tested for mold to be sure that's not delaying my progress. I need more IVIG procedures. They've been the most helpful so far, but my brother says its almost as expensive as his UofSC college tuition! I might also need an even more expensive procedure called plasma exchange. It removes harmful auto-antibodies from the blood system. All adds up to lots of expenses to get me well again. 

Having something to do on my good days is always hard. I want to keep my mind positive and be outdoors when I can. The stuff I used to do for fun can't make our family expense list now that P.A.N.D.A.S. takes so much. My parents said writing this post will help me think about what happened to me and how it makes me feel. I want everyone who reads this to learn about PANDAS to help other kids fighting this illness and also consider helping me raise money for something on my holiday wishlist. These are things I wish I had on my good days to occupy my time. 

JORDAN’S Holiday WISH LIST
1.     A bike – I’ve outgrown my BMX 
2.      Gaming console - an XBOX or Switch to play Minecraft would be lots of fun when I have to be inside
3.     Lawnmower – to restart my grass cutting business in my neighborhood. My old one won't start even after I tried fixing it. 
4.     Portable basketball hoop – on my good days, I like shooting hoops
5.     YMCA membership - I miss going, especially because I really like swimming
6.     Guitar lessons – I would like to restart my lessons 
7. Trampoline- I loved our old one
8. Laptop for school work - my old one keeps glitching even after repair

I posted this a while ago but no one visited the page. I've updated it. It’s worth a try. Thanks to my mom and my big brother for helping correct mistakes I made writing this, and thank YOU for reading about me!! Please spread the word about P.A.N.D.A.S!!!

Mom's Note: Thanks for reading Jordan's page. He's never had a public wishlist before but he got excited about this crowdsupporting concept. He actually started writing this on his 14th birthday while he being treated for PANDAS symptoms at John Hopkins All Children's Hospital in Florida. I was excited that he was actually expressing his thoughts about his experience so well. It's amazing how  motivating the possibility of a new bike can be:) I encouraged him to keep writing. This platform motivated him to express what he's been going through with PANDAS. Although he rarely talks now, he's still a very intelligent kid.

Jordan was a healthy and very outgoing kid. He was great at math, science, sports and loved helping people. He was a skillful lefty on the lacrosse field. Then P.A.N.D.A.S. interrupted his childhood and disrupted our lives. We are fighting everyday to get Jordan healthy again. He's fighting too. With proper treatment, his prognosis is full recovery. If his page gets visits, I will post updates about his journey. Click the link below to learn more about this horrific, and yes, ridiculously expensive illness. Karimah (Michelle)

http://www.pandasnetwork.org/