Reflecting on The Rogue Zebra That Has Been Caught. After almost 2 weeks of being in the hospital and having every single test run on him, we were beginning to feel the effects. I was blessed by so much. We had great nurses, attentive doctors, and my sister arranged for her friends to bring us food and snacks. My niece came visited, gave me breaks, brought food and toys. Bug, my daughter came up and brought me coke and toys for the baby. My uncle’s wife came bearing TONS of food and toys for Hunter. I was blessed BUT we wanted a diagnosis.
We wanted answers to so many questions.
- Why was he shaking so violently?
- His eyes twitching all over, why?
- Why is he sleeping so much/not sleeping at all?
- Walking, why can’t he?
- Why did he scream when I stood him up?
- Is he in pain?
- Why couldn’t he sit up?
- He leans to the left, so bad, that I had to barricade him in, why?
- Why couldn’t he chew/swallow?
Let’s Make Our Legs Work
I got him on the floor and we went for our daily “let’s make our legs work” walk around the nurse’s station. While we were walking, we saw Dr. Sweeney and his team pow-wowing about our case. I told them all not to talk to him or make direct eye contact because now, he was terrified of all people in scrubs, with white coats, or stethoscopes. Everyone just kept on talking and while they were talking, they were watching. We had to walk in between the doctors to get through, so it gave everyone a great idea of how he was progressing or regressing.
Stopping to Say Hi
Hunter noticed Dr. Sweeney and he stopped and spoke to him. He told him that he liked him and he needed to come and visit him sometime (cue heart melting)….it took him a while to get that sentence out because his voice quivers and he has to really think about his words before they come out of his mouth. Dr. Sweeney said that he was on the way and by the time we got to our room, he would be right behind us.
So, we headed back to our room. We made it to the chairs outside of our room because when we approached our door…he began to cry saying he wanted to go home and not go in there anymore. Broke my heart. I didn’t know what to tell him. We parked outside the room and watched the people walk by to help ease him.
Dr. Sweeney and his crew came up and I told him of his regressions. That by the third high dose steroid, he had stopped tremor-ing so badly, but that he is sort of stalled. He still struggles with walking and his eyes were everywhere. With his symptoms list, with his regressions, with his body’s response to the steroids, Dr. Sweeney was completely confident in diagnosing him. He said that the entire neuro team had gotten together, that morning, and reviewed everything, and collectively, they came up with this diagnosis.
Hunter was diagnosed with Opsoclonus Myoclonus Syndrome or Dancing Eyes-Dancing Feet Syndrome. It is INCREDIBLY rare, about 1 in 5 million. There is not enough known about it to have a cure, so this is something he will have for the rest of his life.
We will be doing MRIs, CT scans, blood work, PET scans and urinalysis often to make sure there is not minute cancer hanging out. We have had 8 rounds of high dose steroids, 1 round of IVIg immunotherapy, and will have a total of 3 rounds of Rituximab.
So far…we have seen little change. We have good days and bad days. We are all adjusting to our new normal and learning life. I’m thankful to the doctors who heard me and were proactive in finding his diagnosis. My prayer, of course, is for complete healing. For more on this post, please go to Spotting the Zebra post.