Diagnosis: Transverse Myelitis
Oregon, United States
Elliana’s Transverse Myelitis started a few days after she had a virus. She was sitting on her bed and turned around and said “ouch, my back hurts.” This was around May 27th. She had skin sensitivity, muscle weakness, pain, an upset stomach and an elevated temp of 99.3 degrees Fahrenheit. She woke up the next morning with neck stiffness and sensitive eyes. She slowly got worse but would have episodes of feeling better, so we didn’t take her into the emergency room until she started showing signs of what I thought was meningitis. In the emergency room she was able to jump and walk so she looked fine. The emergency room doctor ran multiple tests and said it was just a virus. By that night, we knew she was not ok. She needed to sleep by the window and we couldn’t touch her because she hurt. She couldn’t walk but was bearing weight. On May 30th, we went to Randall Children’s Hospital where they thought she had intussusception, but I finally told the doctors we were more concerned that she couldn’t walk and we weren’t leaving until they found out why. The doctors agreed, and that sent us on two days of tests. On the second day, after an MRI and spinal tap, they diagnosed her with Transverse Myelitis.
Elliana has such an amazing spirit and was a rockstar patient. They treated her with steroids and she was able to start walking with assistance after her 3rd dose. The inflammation in her spinal cord affected her shoulders all the way down, and the doctors said she shouldn’t have been moving. She was sent home on June 5th. We spent 7 days at Randall Children’s Hospital, then she was in physical therapy for two months. Her recovery has been nothing short of a miracle. She still shuffles a bit when she runs, has fatigue and she’s still recovering from the steroids, but she also smiles through it all. Something that I hope for is early detection and of course a cure, but early detection gives people a better outcome. Doctors need to take any kind of neck stiffness after a cold very seriously. Luckily, we found doctors that were experienced in Transverse Myelitis. Elliana is now 5 years old and will tell everyone she meets that she has Transverse Myelitis, which opens the door for discussion and awareness.
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