So… it has been an amazingly long and awful week. I feel like I got hit by a truck, physically, from the stress. I feel like I’ve been beaten up by a rabid baboon with a baseball bad in one hand and a taser in the other hand. I’m ready for the baboon to quit.
In the awfulness (well, that word isn’t a good word, but it did pass spell check so I guess it IS a word) of the week, the news that I was right and that we now are the proud owners of two kids (neither actually “kids” any more) who have epilepsy. Adam’s been having seizures that no one realized were seizures for years. I feel like a horrible parent. I didn’t need help feeling like a horrible parent this week… but I will be fine.
Adam has been having these…
Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.
His Tonic Clonic seizure from just before Christmas was the impetus to go see the neurologist. I’m worried that this may be getting worse. I’m worried that it will get worse. He doesn’t think he wants to medicate the myoclonic seizures away. He has been having them for so long (years and years… even his pediatric neurologist blew them off as nothing so I guess I shouldn’t beat myself up too much… but years and years and I didn’t help him be fixed).
In the next few weeks, he will have his brain MRI and his 20 hour EEG. I didn’t realize that they would hook him up in the doctor’s office to the wires and have a monitor hooked up to him to gather all of the information for almost a whole day. A month from tomorrow we will go back to the doctor to find out what all of his findings are. Depending on what he finds, there may or may not be more tests.
If you see a pattern of ’twitches’ that include arm jerks and neck jerks but that occur when you are having a perfectly normal conversation or just at random times (not when they are falling asleep, that happens to most of us)… pay attention and push people to pay attention too!!!
Yes, I will be fine. Yes, I will eventually stop beating myself up over everything.
For now, it is who I am and what I do… and I’m trying to deal with having to broken kids who I feel like I’ve let down…