It's EEG day. I am much
more relaxed about the possible results since she started Sabril 2 weeks ago.
I honestly do not expect to be told she has hypsarrhythmia, nor would I
expect her background to be typical normal. I am pretty positive the
reading will be "typical Sonzee", with her usual spike waves here and
there, but nothing too shocking for a child with a CDKL5 mutation. Yet I
am sitting here for the first time in her life wondering why we are even doing
this EEG in the first place.
I have known since her diagnosis
that seizures were the most challenging component of a CDKL5 mutation. We
have lived in a constant state of fear that they will cause significant brain
damage or take her life. We have treated her spasms (the most
dangerous to development at her age) with steroids and now
Sabril. We have chased after complete control with practically every
marijuana and hemp based CBD oil, along with straight THC (go ahead you can
judge us). There is always that wonder about what Sonzee would be like if we
could control the seizures. The fog of seizure control completely taking
over the simple fact that she will always be missing a
complete CDKL5 protein.
Despite knowing that seizures are
just another side effect of her missing protein, I often forget that even if
the seizures are controlled, she will not ever be typical. Even with complete control, she will always have
challenges. Truthfully, with complete seizure control the types of
challenges I have seen in other children with the same diagnosis are in my
opinion sometimes more challenging. To
the naked eye our kids look typical, but get up close and it is clear they are
not like the average child.
There really is no winning when
it comes to the outcome of Sonzee's EEG results. No matter what, the
outcome is still the same. If her background is typical, she is not going
to miraculously be a typical 18 month old when the leads are removed from her
head. If they are typical Sonzee results, well then tomorrow is just like
every other day she has had. If for some reason my mom gut is on a
complete vacation and it turns out that she does have hypsarrhythmia, well I am
pretty sure Sam and I are not having her endure another round of steroids.
I personally cannot put her through that again myself.
I am coming to terms with the
realization that no matter what we do to stop the seizures, there is nothing we
can do to change the importance of the CDKL5 protein...and for that, I need to
go and buy myself some more ice cream.

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