What do kids classify as normal? When I was in 6th grade, my definition of normal was walking in the hall with my friends, listening to music, and thinking I was cool because I had more independence than I did in elementary school. I considered myself completely normal until December 4th, 2014 when I was diagnosed with Guillain Barrè Syndrome.
It all started on Thanksgiving day. I had a nice dinner with my family at the aquarium buffet. That was a tradition for our family since the rest of our family lives more that 500 miles away. After dinner, my mom, dad, and I went shopping at Target, like we did every year, and my legs started feeling really tired. My feet felt like they were asleep as the feelings of pins and needles creeped up my ankle. My mom figured I was just tired and we went home. 2 days later, the weakness continued and rose to my knees. My mom decided to take me to the ER because she is a nurse and she knew something wasn’t right. The ER doctor ordered a chest X-ray and blood work all which came back normal. I was diagnosed with a pinched nerve and sent home with bed rest and low dose painkillers. The next day, I woke up completely paralyzed from the waist down.
I was referred to a neurologist, on December 4th, who ran many test including an MRI, EMG, and a spinal tap. The whole day is fuzzy in my memory , but I remember yelling at the nurse performing my EMG to stop even though I couldn’t feel a single thing. We had to go to a different hospital for the MRI and spinal tap, I remember screaming and fighting my mom in the car because I did not want a needle in my back. I didn’t have a fear of needles, especially after watching a nurse shove what seemed like 3 inch needles in my small legs. But I only accept needles when I can watch where the needle is going. I think it’s a mental thing, or maybe a trust thing. I mean if you were 11 years old, who would you trust? Lucky for me, the hospital my mom and I went to didn’t have a doctor comfortable performing a spinal tap on a child. My mom was so mad, but I was in the corner with a grin on my face while the tension was released and I was released. The MRI was fine Bc I mainly slept, I couldn’t move anyway. At the end of the day, the neurologist called my mom and told her that I had Guillain Barrè Syndrome.
The treatment plan seemed easy at first. I was going to have a 5 day infusion of IVIG then a one day dose every 3 weeks until i showed improvement. The best part, I was able to do my treatments at home with a home health nurse! I started my 5 day infusion and returned to school in a wheelchair. Remember how I described my 6th grade reality? Well it was completely shifted up-side-down. I was no longer independent. I was embarrassed and frustrated. One of those 5 days of my treatment was my birthday. It was on day 3 and I was tired, sick, and depressed. I couldn’t even finish my birthday dinner or cake. I was also told that I may never walk again . I’d say that was one of the hardest days of my treatment.
After Christmas, I had a follow-up EMG. It was very painful. But that was the best part. The test being painful meant that I once again felt my legs, and could start physical therapy! I took my first steps and got stronger and stronger every day. By spring break I could even take a few steps on my own.
I got stronger and stronger until around the beginning of May, when I started feeling weak again. It wasn’t like paralysis, it just felt like everything was harder. Walking felt heavy, even breathing felt exhausting. My physical therapist used to yell and shame me for not trying harder. It’s not that I wasn’t trying, it’s that it literally felt like I could not do it. That is when my doctor diagnosed me with CIPD and told me for sure I was never going to get better.
My parents were not going to accept this. They were already not happy that I wasn’t going to a children’s neurologist, instead I was going to a adult neurologist. That was because of insurance. So after weeks of fighting, I finally got an appointment with a neurologist at Texas Children’s Hospital. The doctor gave me a whole new perspective with new treatment plans and gave me hope. . I got a service dog, which really was just my big dog at home who is trained to do little things which helped me. But hanging out with an animal really lifted my spirits. I got stronger and stronger and once again was strong Enough to walk. I ditched my walker at school at the end of my seventh grade year and walked out of school for my last day of school.
I am now a freshman in high school, I am on my schools color guard team, and I’m doing very well academically. Guillain Barrè Syndrome changed me in many ways. It taught me keep fighting no matter how hard the battle gets. It taught me to find the good in a horrible situation. There’s always an upside to a terrible storm. It taught me that it’s not about the size of the dog in the fight, but rather the amount of fight in the dog. It inspired me to go into medicine once I graduate high school.
