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My Journey with PANDAS

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BC: Published by Am&Ali.co November 2008

FC: My Journey with | PANDAS | (the disorder, not the bear) by Amber Vaught

1: This story of inspiration is based on the true life story of a boy who lived his entire childhood battling the traumatizing effects of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS).

2: I awoke to bright sunshine streaming through the blinds in my bedroom. Then it hit me--today is Saturday. It's my last soccer game of the season! Wow, it doesn't get any better than this!

3: I was so excited because I had not been running and playing as hard as I usually would because I had strep throat last week. I had finished all of my medication, and I was ready to go! Look out!

4: They called me "Tiger" because I played so hard and fast. Just as the whistle blew, I got the ball and dribbled towards the goal. I was in control of the ball and down the field I went!

5: All of a sudden my legs went limp, and I fell to the ground. Gee, I thought, that was weird! I picked myself up and kept running towards the ball. Before I knew it, my legs buckled and I fell down again! | I thought to myself, what is wrong with me?

6: I started to cry. My Dad ran onto the field and scooped me into his arms. I knew by the look and tears in my Mom's eyes that something was very wrong!

7: Within minutes, we were in the car headed to the doctor's office. We went inside and the doctor asked me to walk down the hall for him. | I started walking and there I went. Three steps forward and BOOM, down on both knees. Talk about feeling weird!

8: I couldn't stop it. Both knees had to touch the ground. The doctor said that he knew what was wrong with me because he had just read about it in The American Journal of Medicine. It was called PANDAS. | I thought to myself, I'm not a panda bear!

9: PANDAS is another word for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal. My doctor told me that my strep throat caused this disorder. He made an appointment to see another doctor that would help me feel better. Little did I know, this was the beginning of a long search for the perfect doctor who could help me defeat PANDAS.

10: In the mean time, I was starting kindergarten. I couldn't wait, even though I could only walk three steps without dropping to my knees. I learned to do it very fast and bounce up quickly.

11: Although I enjoyed school, it was hard for me to pay attention in class because other symptoms developed. I kept blinking my eyes and shaking my head. The doctors said that these things are called motor tics.

12: I became very hyper with all of these things going on in my body. I was always moving and running, never walking. Believe you me, this got me in trouble sometimes!

13: My kindergarten teacher was great because she understood all of my problems! She always made me feel happy, even though I was fighting this horrible disability. She always called my mom to pick me up when it got too bad.

14: Not all of the kids in my class were as nice as my teacher. Sometimes they would laugh at me when I fell to my knees or twitched my head. I promised myself that I would never make fun of anyone who has a disability.

15: After school, we visited a lot of doctors. My family and I always prayed that one of the doctors could help me. None of them knew what to do. Even though I wasn't getting better, I tried to be as normal as possible. I just wanted to be like everyone else.

16: I had always wanted to play basketball. I didn't let my disability get in the way! I tried out for the team and made it! I was a good basketball player. I would dribble the ball, drop to my knees, and "pop up" to shoot the ball. Most of the time, it went in the basket! It felt great to play like a normal kid.

17: My parents tried to put knee pads on my knees to keep them from bruising. My legs were so skinny that the pads wouldn't stay up on my legs! I didn't let that bother me. I only wanted to have fun and play hard!

18: I had all the love in the world because my Mom, Dad, and Sis were always there for me. My mom always said it would get better if we just kept believing and had faith. She said, "Let's take a lemon and make lemonade!". (This means to take something sour that is not so good, and turn it into somthing good and sweet!)

19: After searching for years, we finally found a doctor who could help me at the National Institute of Health (NIH) in Bethseda, Maryland. Our prayers had been answered! This was our first miracle.

20: With our hopes held high, we boarded the plane to Maryland. Little did I know that this was the beginning of a once a month plane ride for many years! After we landed in Maryland, a van from NIH picked us up and drove us to the hospital.

21: We stayed at a great place called The Children's Inn. That's the neatest place in the world! They have computers, ping pong, pool, and everything you can imagine! Sick children, just like me, come from all over the world to visit the National Institute of Health.

22: The greatest thing was that everybody had a smile there! People were not crying because they were happy! | We looked forward to being together and having fun. Somehow, this made it all better!

23: Every morning, we all left to go up the hill to the hospital for our treatments. We didn't like this! I had to have seven tubes of blood taken from my arm, an MRI of my head (I was put in a scary tube), an EKG of my heart (wires were hooked to my chest), and an EEG (wires were hooked to my head and in my hair...YUCK!). Thank goodness my preacher was there with me!

24: After all of the tests, I was finally ready for treatment! The doctors learned that the strep germ had attacked my brain and was telling me to drop to my knees. To fix this, I had to have surgery to put a tube into the top of my leg. This didn't work and it hurt really bad!

25: The doctors tried a second treatment to help me because the first one didn't work. They used a machine to filter my blood and take out the bad germs. This treatment helped me feel better. It was unbelievable! Everyone was so nice. They helped me feel even stronger!

26: I will never forget the wonderful people and children that touched my life. I will always be thankful for the kindness that was shown to me there. I left the Children's Inn with my final miracle! The doctors fixed my disability so I don't drop to my knees anymore! Every day is a blessing!

27: Dylan Harris A walking inspiration.

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  • By: Amber V.
  • Joined: about 10 years ago
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  • Title: My Journey with PANDAS
  • (the disorder, not the bear)
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  • Published: almost 10 years ago