Level 4 Epilepsy Center - What to Expect?

southie · 05-25-2007, 02:03 PM

I went and saw the Epi @ the Level 4 and his Nurse too and some
of the Staff, and they're the greatest! He already had info on me
and the additional info I brought in plus the scans just confirmed
everything so he had the final authority:

Intractable (or Refractory) Complex Partial Epilepsy with Secondary
Generalization

So already fed the vampires, I mean - had fed the dogs, errr, Labs,
I mean did the Lab work - but never had so much blood drawn on
that day.

Will have upcoming in-office egg rolls, I mean EEG, but I'd rather
have the egg rolls - especially with shrimp in it.

An updated 2007 Meow =(^..^)= Scan I get to PET, or is that a
PET Scan?

Along with the MRI WOW (What's so WOW about
it?)

(My HUMOR is bad isn't it?

)

The Epi just wants to see the continued progression decline of
it all, since everything else he had was last year's so what I had
brought in was this month's and last months (2007) so he wanted
everything up-to-date.

BUT HE DID NOT touch or change my medications and won't do
anything until all the reports come in and will determine after the
Dental/Oral Surgery - that HAS to be done first.

They really appreciated me bringing in the OLD RECORDS from the
past (from birth, school, and a couple of old medical documents),
so it gave him a whole general perspective.

My Mother's Ledger really helped BIG TIME - especially with all
the specific dates on there, including with Shands Hospital dates,
and details in there - although she didn't record everything, but it
was sufficient. And the School's Info (yeah - my mom saved every
thing *blush*) and the IEP (Individual Education Plans) were also
big help as well, and especially the neuropsych tests and the
fluctuation, the comments, etc - showed them that it existed, it was
there - ALL THE TIME. While they were carbon copies, some of them
were faded, but they did make copies of some of them.

By that time - then he should be able to have a plan and an idea,
and be able to figure something out, he will also be making some
phone calls as well. What's so wonderful about this is two things:
1) Being a native in this area and 2) This hospital is part of the Huge
Hospital System so it's easy to get access to my records/history.

It wasn't bad as I thought it would be, since I had a bad experience
before with Level 4 elsewhere (not Shands - but at another State),
even my interpreter insisted on being at all my appointments, in fact
she was so engrossed by Epilepsy, she actually took all the brochures
when they weren't looking, but one staff caught her, and she was
stuffing her purse with them... and she was asking a lot of questions.
She was actually given some books on Epilepsy - she really was deeply
interested, as she only knew about "Grand Mals / Tonic Clonics" and
"Petit Mals / Absence" - and that was it, and I shocked her in the wait-
ing room when I told her there's tons of it, and the staff was telling her
about it.

YAY for ADVOCACY!

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