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Acute Flaccid Myelitis
Oct 13, 2018 Latest post:
Nov 29, 2018
The purpose of my site is to act as a resource for families dealing with AFM as well as to raise money toward research of this condition.
Shortly before my 12th birthday I got sick. I woke up one morning and was nauseous and threw-up. By the next day, my upset stomach was better and my fever had gone down to almost a normal temperature. My neck felt heavy. My mom took me to the pediatrician because she was worried I might have meningitis. The pediatrician assured her that I did not have meningitis and that I should go home and get more rest. The next day, my neck was still feeling heavy and so was my right arm. It was hard to move or control either of them. My mom took me to my chiropractor who immediately tested my reflexes. They were very sluggish. He recommended that we go the the hospital. We went straight to the U of MN Children's hospital. We checked into the ER. After meeting with a wonderful neurologist (we are checking to see if we can share his name), the doctors did an MRI of my head, neck and spine and told my parents that I had transverse myelitis. At the time, they did not connect my illness to a larger syndrome...it was not yet known as Acute Flaccid Myelitis (AFM).
The doctors immediately put me on high dose steroids to reduce the inflammation in my spinal column. While in the hospital, I was unable to hold my head up or move my right arm. The weakness slowly extended down my right leg. We did not know why this was happening to me. At one point, the doctors thought my heart and breathing might be affected by the AFM. I was in the hospital for about 10 days - two of those days in the ICU.
I started PT and OT in the hospital and have been doing therapy ever since. Once discharged from the hospital, I did therapy at Gillette children’s rehabilitation for about a year in addition to lots of work at home every day. After a couple of months I started going to a gym called YoungQuest Fitness where I work with a physical therapist and personal trainer two days a week. I have been working out there ever since (my parents are creating a journal entry that documents all of the therapies we have done and tried - this will be available on this site shortly). It has now been four years and I am much stronger than before. Some kids recover completely and I hope to have a full recovery within the next (hate to say it but it’s better than nothing) 5-20 years.