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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