Prior to the official CDKL5 diagnosis, we were told by the epileptologist who originally read Sonzee's EEG that she was most likely not going to outgrow her seizures. At the time it was Sam who was told this when he asked him if he thought she might. The doctor never went on to explain why he felt that, nor did Sam push for clarity. I took that statement to mean the reason behind her seizing wasn't "a good one". When she gained the CDKL5 diagnosis, we feared her getting the infantile spasm diagnosis, but held onto the fact that at the time she had only 50% chance of them occurring. Sadly, it wasn't her that was spared. Although we didn't have any sort of seizure control it was during and then after failing the specific infantile spasm treatment that I feel like we started losing this battle.
For close to 5 years we have made every attempt under the sun to try and alleviate some of Sonzee's seizures. We have failed a ridiculous amount of medications, had a device implanted, attempted CBD and THC with her very own medical marijuana card and knowing it most probably wouldn't help, still tried the CBD that became FDA approved last year. Don't get me wrong, everything we have done has in some way made a slight difference, we have achieved some minor victories with these little CDKL5 wars, but it just isn't anything substantial enough to allow her to gain skills or not suffer all the time from constant seizing.
This past August for the first time in her life I said, "no more". No more to the "maybe it will work", no more to the "let's just see", no more to the "we don't know", no more "trying it out". After close to 5 years I know how this game works. We had enough history to say "no more" was a completely educated statement. However, when you aren't alone on a journey like this it takes both parents to say "no more". Sam wasn't quite on board with what he calls giving up. He wasn't quite ready to throw his hands up in the air and say we have given it our all, and so despite my better instincts I said "One more time, and this is it. We give her a hardcore med and you see that it won't work and she will lose her head control and then that is it, we are done."
As of Thursday last week our epileptologist said, "if it isn't working, wean it as slowly as you started it". So here we are, like I anticipated with just another medication/combo failed. There is no victory in "being right", in "knowing" this was going to be the outcome. There is just pure defeat, sadness, and anger that her CDKL5 diagnosis continues to prevail. It continues to wreak havoc on her body and especially her brain. It continues to not cut her any slack or let her have a victory. It just leaves us all sitting here wondering..."now what?!"