Baby Damon has had two EEGs and a bunch of blood and urine work done. The two EEGs didn't show anything. The next step is to do an extended video EEG like Aidan just recently had, and an MRI. The problem with Myoclonic seizures is that the EEG can show normal in between seizures. We have thankfully ruled out Infantile Spasms already, which is the worst epilepsy a baby can have. So great news there... though it only confirmed what I already knew. There are also what's called Myoclonus, which is jerking that doesn't show as seizures, but comes from spinal cord or nerve problems. So we are looking at it being either Myoclonic Epilepsy, or Myoclonous. His MRI is scheduled for the same day Jace goes in for his Sleep Study and overnight EEG. The extended EEG hasn't been scheduled yet, we just got the word it has to be done. In the meantime, it looks like he's got teeth coming in!!!
Aidan's medication is working better, but still not the best it should. I now have the seizures on video, so I can show the neurologist I'm having to still work with until May, and hopefully get some more changes made. If not, I'll take it to the new neuro.
Jace is Jace. He's either really fun and hilarious, or he's really annoying and frustrating. Ahhh, toddler-hood with sensory issues, fun fun fun.
2 comments:
Ah, your boys are just SO cute: I want to kiss Damon's cute little cheeks: Hopefully the rest of the tests will come out good; I was sad we were unable to get together- I hope the next visit. I know how crazy all the medical stuff is so we will have to play it by ear: Your boys are just darling, your blessed and they are blessed to have such great parent.s
My goodness! I can only imagine how frustrating it must be to have these issues with your boys. The unknowns have got to be the worst! Your boys look so sweet and cute.
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