Saturday, June 11, 2011

Spoke with the Neurologist

So I'm just going to do a quick update on Jack here. There is more to tell, like about his yearly scans. And the fact that no one listens to parents. And ECI and how we now have a $500 bill for the evaluation that finally convinced them that HELLO, he's falling behind. Which I have been saying for 9 months now. But they don't listen to parents. Even parents with degrees in Early Childhood Education. But again, that is another story.

Jack had an EEG about a month ago. He didn't have any seizures while he was hooked up (it was a 24 hour EEG where we brought him home) but we figured the doc could still get some info from it.

When I spoke with him, he said that Jack is having a lot of discharges in his right frontal lobe, which is where the seizures are coming from. Discharges aren't actual seizures, they are small abnormalities in a localized area, whereas seizures affect the whole brain. The discharges are quick too and seizures last a lot longer.

Anyways, he says that the discharges being in one area is good and an improvement. Previously they have been is a few areas. Basically, he thinks that this means that Jack is a much stronger surgery candidate at this point.

We have to go to Houston on July 1st for a MEG scan (and come up with $1500 to get it done). The scan should tell us how deep within the brain tissue the seizures are coming from. If they are just on the surface that area can easily be removed, if it is from further down it is less likely they can remove it. And yes, we are back to talking about cutting out a part of my child's brain (which makes me want to vomit). But the doc is pretty sure that keto isn't going to be his miracle, even though it has helped tremendously. He is still having about 5 seizures a week and he is falling behind developmentally which means the seizures are taking their tole. We have to do what we can to get them stopped and this is the next (and last) option.

Please say prayers for him.