We
have been to Chapel Hill and had a 36 hour Video EEG and now we are back home
again. Her EEG did NOT show Infantile
Spasms. When she has an EEG, there is a
little button we push every time we think we see a seizure. She had several of the episodes that are of
concern to us and hit the button every time.
As it turns out those movements didn’t even register on the EEG. Nothing, not a blip, not a spike, not a
change and definitely not hyppsarrythmia (the brain wave pattern that is the
signature of Infantile Spasms). I can’t
tell you how surprised and how so very relieved we are to know she isn’t having
infantile spasms.
We
arrived in Chapel Hill last Wednesday evening around 8:45pm and we were
admitted pretty quickly. By midnight,
she was hooked up to the EEG and she didn’t like it!!! She handled it admirably after everything was
actually in place and she was hooked up, but she let it be known that EEG’s are
not her cup of tea! It was nice to see
familiar faces and meet some new ones this time around. I must say, Peyton always receives the best
care at Chapel Hill. They know lots
about the keto diet so it’s always seamless with her meds and her food. We are so grateful for the team that cares
for her.
Her
EEG actually looked a lot better than the last time she had one which was in
March of last year. Her seizures have
always originated in different areas of the brain, left side, right side,
upside, downside! This time, her
seizures all focalized in the rear left area of her brain. We don’t really know what this will mean, but
we do know that when they can see where the seizures are coming from, they can
sometimes do a surgical evaluation to see if she would be a candidate. This is a giant big huge deal and lots would
have to happen and be evaluated before we ever got to that point, but at least
we are a tiny bit closer to be able to do SOMETHING about these seizures. We feel so helpless at times and we want to
know we have exhausted every single avenue of treatment so that one day
(hopefully sooner than later) we can say we killed the seizure monster.
Not really in her happy place
Watching Cailloux - nothing else to do when she's all hooked up!!!
EEG Hair.
Leaving the hospital and still pretty unhappy about the whole EEG thing!!!
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