Dominic’s NMO Story – Guided Through the NMO Storm

On December 25, 2018, we finally received answers and a diagnosis after Dominic became ill on November 19th with what we thought was a bug that was going around his school…

He was taken to Children’s Hospital twice in one week because he wasn’t getting any better with his symptoms. A couple of days passed and he wasn’t getting any better, in fact, he was getting worse so we took him to Georgetown University Hospital. They ran a variety of tests and x-rays to see if they could find what the source of his issue was. They found that his potassium level was low among other things so he was admitted on December 2nd for further tests and observation.

Dominic started going downhill slowly yet rapidly. His first day in the hospital, we noticed tissue with his tongue looking swollen. He was’t able to eat or talk due to issues with his tongue. He was unable to stand up without assistance, experienced breathing issues, was losing the ability to control his bodily functions, and appeared to going paralyzed. His oxygen levels indicated he was losing oxygen and he was placed on a ventilator.

Despite all the tests (MRIs, CT scans, spinal taps, blood work, etc), nobody seemed to have any answers. 

Days went by and we still had no answers. All we could do was pray that someone finds an answer soon so that he could be treated and get better. We didn’t have time to give up. My mother and I were persistent and eager to find our own answers so we reached out to other hospitals via email. The doctors were treating Dominic as a Guillain-Barre patient because his symptoms and test results seemed to align with that diagnosis.

Then, a ray of hope – a resident who worked on a different floor of the hospital heard about Dominic’s condition. He looked over his chart and came back with what he suspected was the correct diagnosis. He connected with Dominic’s medical team and they sprung into action to correct his treatment and medications for that of neuromyelitis optica. NMO has no cure, just preventative and acute treatments.

After getting diagnosed and having his medications adjusted, we noticed improvements within weeks. He was more alert and tried to squeeze our fingers in rehab. Side note: I was pregnant during this entire debacle and taking care of my 7-month old daughter. Needless to say, I was really stressed. I wasn’t sure if the stress would cause me to miscarry or lose my baby because of the way everything was going. All I knew was that I was losing my son and daughter. Months went by and he began to regain consciousness, sensation, and was able to move his limbs a little at a time. After rehab at the hospital for weeks, Dominic was transferred to Kennedy Krieger Institute (KKI) in Baltimore for continued rehab.

KKI worked with Dominic on his ability to walk, talk, and work towards getting back to a normal routine. Dominic went through rehab and was released a few days before his 11th birthday in April. He has had a few hospitals stays here and there since being home, but he is and has been blessed and doing well. I thank all my NMO family, my family and friends for all your calls, texts, Facebook messages, and visits throughout all of those stressful times but through it all, I thank God he guided us through the storm.