New findings

I finally got the disc of seizures/behaviors together to send to our clinic. Then spent an entire week anxiously waiting to hear back, and finally yesterday I did.

Even though I included a very detailed note, it still took quite a bit of conversation to convince them of my purpose. Which, by the way, was two-sided. First, I wanted to know if they could identify the types of seizures Austin's been having, and second, whether or not there is any significance to the right sided behaviors and seizures. I practically had to spell it out. And what did I find out?

Well, first of all, they are categorizing his seizures as tonics and atonics.

But, the most surprising of all?

ONCE I finally got the message across that I wasn't concerned that the hand slapping and leg grabbing were seizures, but rather an aura of sorts, I got her attention. By the way, I still had to get past the fact that our lead doctor didn't care if they were auras or not. He said that regardless if it is in fact an aura, it doesn't matter. I told her my concern wasn't whether it was an aura, but does it give any indication whatsoever of a focal point? That in combination with his recent right sided seizures AND the early preference for his left hand.

"Well, that's a very good question, and that's exactly the types of things we like to look for in trying to locate a focal point."

Okay...so....?

Here's the most mind boggling part for me.

She looks back for the report on his most recent MRI (from February). I never did get the results from this one. I cornered our doctor in the elevator and asked him while we were in the hospital initiating the diet if he had results, and he hadn't reviewed it yet. He pretty much said he would let me know if there was anything different. So, about five months later, I'm still assuming it was clean. But it wasn't. And no one notified me.

Apparently, there appears to be dysplasia in his left frontal lobe. LEFT.

And when I inquired about whether or not there was any significance to his latest behaviors and seizures, he didn't even bother to think about it. He just said the hand slapping is not a seizure (which wasn't at all my question) and that it could be an aura, but it "doesn't matter".

Needless to say, I'm 100% convinced that it does matter. And the doctor I was speaking to (she's the one we've been dealing with for the diet, but reports to our main epilepsy specialist) agreed.

She said that she certainly believes this warrants further investigation. Duh.

However, there is one potential problem. There is no correlation with his last VEEG (from January). Actually, even though there's no focus indicated during the seizures themselves, it shows more activity on the right side between seizures. Which is not supportive of his MRI and behaviors.

She said they definitely need correlation to pursue surgery, and will discuss with our other doctor what steps we may need to take in order to get more information. She's already mentioned the "E" word. I hate that one. EEG.

I, on the other hand, have another plan in mind, depending on what his opinion is. I'm thinking (especially if he blows me off again) about another doctor in another hospital. In fact, I think I've already found one. They boast a PET scan & the only MEG scan in North America specifically developed for children. And it just happens to be in the same medical center. I don't know what the chances are for getting a MEG scan. Or the PET. Or even if the PET scanner they have can accommodate a child Austin's age. But, if we don't transfer we certainly won't get them done. And if we do transfer, we'll at least have our foot in the door and be one step closer to getting these tests done.

I was just talking to my mom this morning. I think the part I have the most problem comprehending, is that this guy has all the education and the resources to try to make a difference in a child's life. My child's life. And, as she said, he dropped the ball. Now, I don't know whether or not Austin is a surgical candidate, but what if he is? And this doctor doesn't even care. This isn't just any situation. It's my son's future. His entire future is on the line here. I've completely lost any and all confidence I had in this guy, regardless whether or not Austin's seizures can be stopped by surgery. I just can't trust that he's trying everything in his power to help us.

So, that's where we are. Oh, and by the way, we're going down on Austin's ratio on the diet. Seizures and lipids are just too high to continue like this. The risks are starting to outweigh the benefits. Our plan is to lower it slowly and monitor closely for changes. If the seizures don't change we will keep lowering it until we either: a) see a change, at which point we will reassess the diet's effectiveness, or b) have him completely weaned from the diet.


For any of you parents that have dealt with the surgery, I'm curious how many of you have had solid EEG evidence correlating with the PET and/or MRI. I know it can't contradict, but how many have proceeded with surgery without a useful EEG?