My sons story

General
1

Thank you accepting me in to the group. My son contracted a virus on February 24 and 3 days later we were rushed to the er. My son couldn’t move or feel anything. We were told he had viral encephalitis. The next day we wre told he had a tumor. Finally, we were diagnosed with ADEM after his lesions responded to steroids. He is an usual case with tumefactive bithalamic lesions and one lesion in the cerebellum. We had steroids, ivig, and plasma pheresis during our 5 week ICU stay. I prayed nightly for his pain to stop and for his heart rate to not bottom out. We were made no promises for recovery. We left for inpatient rehab with improvements on his MRI but little clinical improvement. We spent 6 weeks in inpatient rehab. We now have therapy 4 days a week. He can walk now but is very unsteady and will get leg braces this week. He is no longer fed through g tube but is still on a soft food diet. His hands are not functional and just recently starting to occasionally pick up small things. His 6 month MRI showed significant improvement with no new lesions. The doctors are pleased with his slow progress. I am devastated. My two year old can’t play with toys or hold his own cup or feed himself. We are traveling to Boston next week to see Dr. Gorham who specializes in pediatric demyelinating disorders. This is such a lonesome place to be. We are eight months out and I am so nervous because most children are said to recover within six months. Thanks for reading our story.