Part 2: Have You Ever Tried to Nail Jello to a Wall?

Continuing to Praise God

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.  I picture my family and me 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.

This Past Year

That is how I have felt in this last year.  Our official clinical diagnosis was made.  Sadly, there is no definitive test you can do.  Also, 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 diagnosis took hold, I did TONS of research.  I joined a wonderful online support group, and I received encouragement and a wealth of information.

Protocol

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 to MAGNIFY his rages, insomnia, and severe OCD tendencies.  My sweet little boy was not there anymore.  He was like a raging animal that always stayed in a fight or flight mode.

Second Opinion

Getting a second opinion, without permission!  Dr. Lightner answered so many of my questions.  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 stated that Hunter’s condition was more progressive in nature.  Dr. Lightner 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).

Same Tests, Same Answers

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.

Zebra versus Okapi

In the medical field, a ZEBRA means an unlikely diagnostic possibility. It comes from an old saying used in teaching medical students.  These students are taught how to think logically regarding the differential diagnosis: ‘When you hear hoofbeats, 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 (incidentally my all time favorite animal).  They are incredibly rare.  His new diagnosis took us by surprise, yet again it was something I had requested he be tested for a year ago.  Sadly, I was not listened too because I’m just the “uneducated mom.”

Part 2:  Have You Ever Tried to Nail Jello to a Wall?

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