It is *so* easy to praise God when all is good in the world. When things are running smoothly and all things are moving and grooving in a good flow.
You and your family are sitting around a campfire singing Kumbaya…….
Then, you see your fire starting to go out and it is getting cold outside and you are frantically searching for anything and everything that you can burn to get that groove back.
Before you know it, a bird flies overhead and he pees on your ember. Your flame is gone and you are sitting there…cold…in the dark. You think it can’t get much worse but you have eaten that last s’more. No heat, no light, no food…..doable, sucky, but doable. Then the monsoon hits and you feel like you will never be out of this space and your fire will never come back.
That is how I have felt in this last year. Our official clinical dx was made…there is not definitive test you can do, no amount of MRIs, LPs, blood work, X-rays, EEGs….nothing can officially say this is what you have…it is a combination of symptoms and what they equal up too.
Opsoclonus Myoclonus Syndrome was 1 in 10 million….it may be more like 1 in a 100000 now, I’d have to look. Once this dx took hold, I did TONS of research. I joined a wonderful online support group and I received encouragement and a wealth of information. We started high dose steroids, while hospitalized. We also started our first, of many IVIG treatments. The IVIG was done monthly. Closely following coming home (in the hospital for about 12 days), we start Rituximab (a type of chemo). The total on that was about 4 treatments. Since those were not working, we moved to add in ACTH. This is a dose shot that we gave him daily. It is another type of steroid. We did this for about 3 mths. All this did was MAGNIFY his rages, insomnia, and severe OCD tendencies. My sweet little boy was…………….not there anymore. He was like a raging animal that constantly stayed in a fight or flight mode.
In that time, my frustration overwhelmed me, so I contacted an OMS specialist in LA. She answered so many questions and her openness, honesty, forthrightness, and in my face wording helped me so very much. I also, physically, took Hunter for a second opinion at yet another children’s hospital. Dr. Lightner was a breath of fresh air, though I did not care for what all she said. She felt that this was more progressive (she did not see the ocular flutter which, to her ruled out OMS). She wanted to run all the tests all over again (which it had been a year and we were going to have to do that with his regular neuro anyway, so we allowed that).
All tests came back the same and while he was at the hospital, the ocular flutter reappeared which made her believe that it was OMS (confusing I know). So, in the end, we felt confident in this “clinical” diagnosis. She said, in her opinion, she would try the protocol again, but that is something I needed to discuss with our regular neuro, as she was just confirming a diagnosis.
In the medical field, a ZEBRA means a very unlikely diagnostic possibility. It comes from an old saying used in teaching medical students about how to think logically in regard to the differential diagnosis: ‘When you hear hoof beats, think of horses, not zebras.’ Hunter was not a horse, we THOUGHT he was a zebra……
Then, we discovered that he is NOT a zebra….he is an Okapi (incidently my all time favorite animal). They are incredibly rare.