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Jaxson and I are home.

Home about 4 days earlier than expected.

Why?

We got some VERY unexpected news.

As a matter of fact, I'm still working on picking my jaw up off the floor.

We finished the EEG, stopped the diet, and came home.

All of those episodes that Jax is having. The episodes that sometimes cause his heartrate to drop, are NOT seizures.

That's right, during the whole 24 hours, there was not a single seizure in his EEG. Now, you'd think this is great news, no seizures. Its not so great. Jax brain is in total chaos. It's misfiring, and sending crazy electrical currents everywhere. Very typical of brain injury kids. But not a single one is classified as a seizure. That means the diet is not going to help, and meds are not going to help. Did he have regular seizures in the past? Yes, so we need to be really careful about playing with his meds. The really bad news is these episodes are neurological, and the not sleeping is neurological, but non of it is going to be fixed by seizure meds.

That means all of the EEG's from the old hospital, at least the ones UCLA was able to pull up, were read WRONG!! They all say that he is having constant seizure activity, a non convulsive status all the time. UCLA said all of the EEG's from the last 3 years, look the same as yesterdays. Not a single seizure. That also means the surgery for his VNS last year was totally unnecessary. Its not having an effect on his brain at all.

Jaxson and I feel the same way about this news.

I don't know what to think. All I know is that UCLA is a top rated neurology team. People travel here from all over the country to see their doctors and get answers. That is one reason I wanted Jax seen there.

I think I'm still in shock a little bit. I put a phone call into our old neuro. I want to give him a chance to explain what happened. I also want all of Jax EEG's since birth sent to UCLA to be read. Not just the report, but the actual video EEG.

For now neuro wants to wean at least one of his seizure meds. Phenobarb will be the one. We will wean extremely slow, he actually won't be off until August. But this is one of the stronger meds, and we'll keep our fingers crossed that off this med, Jax may gain a tiny bit of development.

We have a follow up neuro appointment next month. I will get a list of my questions together, as I get a chance to clear my brain a little bit.

One question I already have is why did these episodes start back up after stopping the diet? And the episodes, and the not sleeping, have slowly gotten worse in the last year since stopping. Could the diet of helped, even if they weren't considered actual seizures? Could it have still been having effect on some of the chaos in his brain? I really hope they can answer some of our questions!

Oh, and I have no idea why the font randomly changes in my posts?