Honestly, I can't quite put into words how the last month and a half has been. I'm just not too keen on David's employer or our "benefits of being a military family".Someday I'll have to tell you about how one of the DR's asked Madison "How can you not be embarrassed with a brother like that . . . ."
I think that was the day after she asked how our visit to the "family compound in Utah" was.
Dr. Cramer is the best man around throughout all of this! He's been on board since mid June and has some colleagues at the U reviewing Madison's record - something not even ONE of the DR's at Tripler ever cared to do. (From the cardiologist, rheumatologist, neurologist, psychologist)
Silly old me wasn't even aware her record wasn't anywhere even close to Hawaii's eyes until halfway through this adventure and the psychiatrist asked if I happened to bring it. . . . . .
What was accomplished in Hawaii:
1 - Madison was incredibly successful with her hypnosis and pain management. We suffered through a couple of trials of different pain medications and varying side effects - but everyone finally came to agree on an anti seizure medication.
2 - No diagnosis. But at least seeing our "mystery case" in person helped dissolve the thought that Madison was faking this whole thing for attention and had "conversion disorder". So we're back home with ever present purpuric rash and butterfly cheeks. And now . . . . she's learned how to "float away on a cloud" when her legs just won't climb one more stair.
3 - I learned that Guam has the highest rate of pediatric patients that are medically evac'd to Hawaii for pain management through the military (which was how we were categorized on paper)
There have been casual studies about what factors are on Guam are contributing to military kids' health, etc. (hazardous chemicals in the soil, exposure to jet fuel, etc.) But nothing official according to the govt.
For all I know - Madi's case could be something as simple as an allergy to the mold that is ever present on Guam.
4 - During our time away. Madi was never completely better - but her pain was less. I was anxious to see what Utah's climate would be like on her body - but I don't know if we were there long enough to really tell. Her rash was quite obvious - but we were really stressed and tired that whole week. So who knows.
5 - We were basically told to "get on with life. Yes - she has symptoms. No - we can't pinpoint it. Give it time, maybe more clues could show up - or it will completely go away."
Real life is no where near an episode of HOUSE, M.D.
It's all just pretty raw right now. Please just try and fill in the glaring blanks.
I'll get out of my funk sooner or later . . . .I have to get on with life by getting Christmas mailed here pretty darn quick!!!!
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