I didn't really expect to have anything to say after this appt. It was a follow up after dosage changes for Aidan. But we did actually have a lot to talk about.
We also needed to show the neurologist the photo of Jace and explain what had happened with both episodes. I figured we were dealing with another symptom of CP, or a partial seizure of some sort. I knew it wasn't at all normal, but my mind didn't go directly to bad causes. There can be several things to cause muscle weakness on one side of the face and body, but knowing Jace and his brothers as well as the circumstances, he could pretty much automatically narrow it to two possible causes. First choice (if we could choose) would be that it's more evidence of the neurotransmitter disorder(s) that they believe is causing a lot of stuff with the boys.
Second possibility, is that he's having mini strokes.
When it happens again, we have to pay better attention to the other symptoms with it. He did lose skills that day. Things that he normally can do, he couldn't at all. And he showed such confusion. He wasn't himself at all. The following day it continued- answering questions 10 mins after the question, memory loss, couldn't do simple math that he's been able to for quite some time...
Then there was the, "I need to warn you" again. (We've gotten that from the geneticist.)
As we keep digging for what is causing all of this, it will not be a, "Oh happy day, we know what it is and can fight it head on." He said it will be bad news, it won't be treatable, and it will bring more bad news with it. I still hold on to what the geneticist said though- but it's worth finding, because we can do things to make it less horrible. And the neurologist added his own "but"- we are taking them to the best possible place in the US for pediatric neurological genetic disorders.
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