Mitch’s Story

Mitch’s Mom: Mitch had been a previously healthy and active child, with no previous medical problems, but when he was 12 years old, we noticed he was having difficulties with balance and he told me that his legs just felt “funny.” At his first appointment with Dr. Mar, she found other concerning things in his exam that led her to order immediate further testing, including an MRI of his brain and spinal cord. I remember sitting in her office when she told us that his spinal cord MRI was abnormal and further testing needed to be done. There were a lot of unanswered questions at that point and I remember my mind just going into overdrive, worrying and stressing out about all the possibilities. Mitch was admitted to St. Louis Children’s Hospital for IV steroids to hopefully stop whatever inflammation was happening in his spinal cord.

Mitch: I remember the first time I got admitted to the hospital, I thought it was kind of cool because I was only supposed to be there for a few days and I got to order room service and eat whenever I wanted. There was also a video game system that got brought to my room that I got to play. After being admitted to the hospital more times I really didn’t like it and got upset if my mom said Dr. Mar thought I needed to be admitted.

Mitch’s Mom: Mitch had intravenous immunoglobulin (IVIG) treatments and also plasmapheresis to try to help his symptoms. Dr. Mar or one of the other neurologists would do an exam on him daily to see if there were even tiny improvements as a result of the treatments. We were so happy and thrilled with even little, small improvement s— like Mitch being able to move his toes a little bit more or having feeling a little bit farther up his legs. Mitch was in the inpatient neurorehabilitation program at St. Louis Children’s Hospital for six weeks and went home still in a wheelchair. This was hard for him — having to go back to 7th grade in a wheelchair. His appearance was different too, since he had been on a lot of steroids.  He did a lot of physical and occupational therapy and was out of the wheelchair within a few months.  He was walking well and we were really hoping that this would be a one-time event and we wouldn’t see any symptoms again. Dr. Mar put him on an oral medicine to try to keep him from having symptoms again.

Mitch: When all of this started — besides all the walking problems — I also had some mild hearing loss. My mom says I would say “huh?” and “what?” a lot. During the summer before 8th grade, my hearing got a lot worse and I had to get hearing aids. I also started having some balance and walking problems. I had to get admitted again and have all the plasmapheresis treatments again. I didn’t improve as quickly this time and was an inpatient for another 4 weeks. I ended up not going to school for almost all of my 8th grade year. I told my parents I didn’t want to go back to school until I could walk and they actually listened to me and admitted me to a day treatment rehabilitation program. My physical therapist and occupational therapist worked with me every day for five months, and after spring break I was able to go back to 8th grade just using a cane to walk.

Mitch’s Mom: It has been a very long four years. Mitch is now 16 and a sophomore in high school. He wears leg braces and walks without the cane. He is working on building up his endurance and hopes to not need the leg braces in the near future. His hearing loss is severe, but with his hearing aids he is able to communicate. The audiology department at St. Louis Children’s Hospital has been very helpful with support for his hearing loss. The hardest part about all of this really is the not knowing, not having an actual diagnosis. Dr. Mar says we may never have a name for what he has, but we joke that one day she and Mitchell will discover it is a new disease and they can name it the Mitch-Mar disease! Mitch says he doesn’t care what it is called, he is just glad that he is better.