Heigh Ho, it's off to Mayo we go!

There are times when I am profoundly, and profanely, grateful that I was raised as the child of a physician and nurse.  It makes me a medically pragmatic parent.  Given the hand the Demie Diva's been dealt, that may not be such a bad thing.

That's what we call understatement in the world of my day job...

So, when we went to the Fabulous Pediatrician for the DD's 7 year check up and the FP looked at me with all the pragmatism of a gazillion years of practice and life as an epilepsy parent, and said "Why do you need a neurologist?" I was floored.  What the heck did she mean why did I need a neurologist?!  My kid freakin' has epilepsy and it's scary stuff, FP.  What?!?!

Then she showed me the clinic notes she got from the person who allegedly had my child's best interest at heart.  One page of social history which focused mainly on my ability to understand and speak English.  One page of drugs on which my child's chemistry was fortunate to depend.  One page of diagnosis codes - including the chronic ear infections from which she hasn't suffered since she was 2-ish, and a diagnosis of "Abnormal EEG" instead of "Generalized Epilepsy".  AND...another page of drugs.  The same drugs.

Nothing about the inpatient video EEG (hereafter V-EEG) that my kid had in February.  Nothing about the neuropsych eval.  Nothing about my request for records to take to Mayo, because I was already sure after the scary drug response from the extant neuro we needed a second opinion.

She had a point.

So, instead of a second opinion, I was hoping that the peds neuro folks at "The Mayo" would agree to continue to care for the Demie Diva.

See...now this is where we go back to the medical pragmatism.  I have no delusions about my child EVER performing at the academic level at which I did.  She doesn't learn that way, and it's not her passion.  But, she was ahead of benchmarks before epilepsy, so something has to be causing this...and it, plus all the other neurological funkiness with which she contends has to be connected.  Only place I know of that thinks holistically is "The Mayo" - and yes, I know the biases of my native state are showing, but you know...sometimes, spending a month at the Diva Grandparents' has its advantages.

In the process of getting ready for the trip up, I was trying to get more than the discharge notes for the V-EEG from February.  (Bear in mind, it's June as I'm getting ready)  And, I NEEDED that film/tape, because my insurance company wasn't going to pay for two of those suckers within a calendar year - and really, who could blame them, what with their executives needing those six figure bonuses and all - and I sure as heck couldn't afford that kind of inpatient monitoring.  I called.  I left messages.  I even used the magic phrase "patient relations"...NOTHIN.  Until, finally, five months to the day after the Demie Diva had been discharged, three days before our consult, I got hold of a human being who told me it hadn't been read.

Pragmatic, yet profane from time to time...

I managed not to go ape.  Barely.  You see, the DD's neuro had been out of town when we were inpatient, and his colleague covered.  BUT, the neuro we usually see was supposed to read her film.  It never happened.  NEVER.  I was somewhat rational when I explained to the person on the other end that Dr. P wasn't our doc, Dr. M. was...and um...this would be negligent at best...I got the CD of the abnormal incidents overnighted - at their expense, and hand carried it to the consult.

Day one was simply a one hour EEG.  Day two was a 90 minute full neuro workup with history.  Where have these people been for the three plus years of neuro hell we've been in?  I learned more in those two days than I have in the years of being treated where we are.  I learned that the Demie Diva's brain is busy; she has abnormal brain waves every three to five minutes - and that these DO affect her cognitively.  I learned that when tired, the DD's brain functions at the speed of a five year old's.  Can we say "blonde" days?

More important, I learned that everything I wondered about as a trigger - overheating, hunger, stress...ALL are triggers.

She is neurologically funky.  Each trigger is tied to a syndrome that she doesn't fully exhibit symptoms of, but that we have to test for causes of.  So...I came home with a list of pages and pages of blood, urine, and spinal fluid tests that need to be run.  They'll go to the pediatrician, she'll order them, and we'll see what turns up.

I came home finally feeling heard.  I am not wrong.  She should be able to do better, but something, chemically, is getting in her way.  No one has ever wanted to know the etiology of the Demie Diva's epilepsy before.  Ever.  The FABULOUS doc at Mayo does.

At last.  At last someone is asking the right questions, and ordering the tests that might give us the right answers instead of throwing drugs at her.