Posted in Adoption, Health, Inspirational Thoughts, Medical, Truth and Honesty

The Rogue Zebra Has Been Caught and Named

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…my sister arranged for her friends to bring us food and snacks.   My niece came visited, gave me breaks, brought food and toys.  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.  We continue to be blessed BUT we wanted a diagnosis.  We wanted answers.

Why was he shaking so violently?

Why were his eyes twitching all over?

Why is he sleeping so much/not sleeping at all?

Why couldn’t he walk?

Why did he scream when I stood him up?

Was he in pain?

Why couldn’t he sit up?

Why did he lean to the left, so bad, that I had to barricade him in?

Why couldn’t he chew/swallow?

Why?  Why?  Why?

I got him in the floor and we went for our daily “let’s make our legs work” walks around the nurses station.  While we were walking, we saw Dr. Sweeney and his team powwowing 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 who he is progressing or regressing.

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 and 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 confidant 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 has Opsoclonus Myoclonus Syndrome or Dancing Eyes Dancing Feet Syndrome. These are a good set of videos as to how Hunter is right now.  It documents the truncal ataxia, the walking, the rages, fine and gross motor skills.  Click HERE to view them all, if you are interested.  It is INCREDIBLY rare.  There is not enough known about it to have a cure, so this is something he will have for the rest of his life.

3 Ways OMS Can Occur

  • It could have been caused by a neuroblastoma (cancer) that his body recognized.  Once it is recognized as being “foreign”, the body produces B-cells that violently attack the cancer so that it is reabsorbed in the body.  Those “aggressive” B-cells do not just die off after the cancer is reabsorbed…it begins attacking the brain at the cerebellum (the part of the brain that controls your body movement) and the frontal lobe (which controls your moods).
  • Idiopathic (meaning it came from a virus)
  • It is a precursor to neuroblastoma (cancer) that can show up with the next few years.

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.

We are going to try and raise money, at some point, for a therapy dog for him.  We are wanting one for his walker/wheelchair needs and for his anxiety and PTSD in regards to doctors and hospitals.

If you have any questions, or if you child suffers from OMS, do not hesitate to comment here, or you can find me on facebook, instagram, twitter, and pinterest (all links are on the side bar).

Prayers are appreciated.  Fundraiser ideas are appreciated.  Thank you all for hanging in there and keeping up with this little series.  I will post more about this in the future.

 

 

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This is our journey of adoption, love, homeschooling and living life to the fullest.....even if we do live in chaos (can't have anyone over syndrome).

2 thoughts on “The Rogue Zebra Has Been Caught and Named

  1. Dear Brandi, I have been “lurking” on Facebook and your blog. Following the story of young Hunter’s illness. And praying for Hunter, you, your family and the doctor’s. This diagnosis of a rare disease is certainly not the best of news. But I think that somehow, knowing what you’re dealing with, must bring an odd sense of comfort. One of my favorite authors – Henri Nouwen – talks about Jesus coming here to be broken for us. He used/s His brokenness to help us know how to use our brokenness to help Him and others. Its a concept I have a difficult time with. But when I read things like your zebra posts, I get a sense of how that concept really works. Though what you write here cannot possibly portray the true picture of the changes this disease brings uninvited to your lives, know that the brokenness you shared has touched me and I’m certain many others. My prayers for you and your family continue.

    Like

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