Diagnosis: Acute Disseminated Encephalomyelitis

Nebraska, United States

It all started with a headache that we assumed was from wrestling too hard. Like any three-and-a-half-year-old, Leland liked to play hard and be all boy. As the week wore on, we saw more and more things that didn’t add up. We made several trips to the doctor’s office, with no real reason for his symptoms that seemed to come and go. Intermittent loss of speech, balance, and true exhaustion.

It was Easter evening in 2013, when we made our first trip to the ER. He had barely been able to hunt for Easter eggs that morning before falling back to sleep. By the time we got to the ER, he was acting fine. After deciding that Leland looked OK at that point, we decided that we would do outpatient care the next day. We went home and put him to bed. The next morning, we woke to him screaming, unable to walk or even tell us what was wrong. We rushed him back to the ER, where the doctors decided that we needed more care. We then went by ambulance to Omaha’s Children’s Hospital. By the time we arrived he couldn’t speak or move.

After tests that ruled out meningitis and other options, we were given the diagnosis of ADEM and told to prepare ourselves for a long recovery, including time at a rehab facility. IV steroids and lots of therapies were doing the trick. Every day we could see the amazing progress he was making. We were able to beat the odds and walk (wobbly but walk) out of the hospital after eight days. We spent eight days away from Aubree, our then 10-month-old. The only time we had ever left her. Leland then followed up with outpatient physical therapy, occupational therapy, and speech therapy. Every day we wake up blessed to have such an amazing recovery and our little boy back.

Leland has a love of science and math. He wants to be a veterinarian when he grows up. We still have lingering effects of ADEM, but that won’t hold him back. His favorite activity is to climb everything that he can possibly find and ride his bike everywhere. He is very active and keeps us on our toes.

Our hope is that in the future there will be more awareness of these diseases in smaller area hospitals. Only because of our doctor’s quick action sending us to a larger hospital, were we able to get such a fast diagnosis. We believe that their quick diagnosis is the reason for our son’s amazing recovery.

Megan Pike