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Thursday, June 19, 2008

Neurological Status

I got Ellie's Depakote level checked again today. It was 95 after 13 hours. This is called the trough. The therapeutic level is between 50-100 - meaning when the drug is doing what it is supposed to do - which is prevent seizures.

95 at the trough.

What the heck is it at the peak?

She is still really, really dragging. Really dragging.

And I had an interesting conversation with her new neurologist, whom I still am really pleased with, even more so probably after the straight up conversation he had with me this afternoon.

Basically he told me that Ellie's EEG results showed that she had "very abnormal" EEG but no electrographic seizures. Very abnormal activity in multiple areas of her brain.

Believe it or not, but he is the first neurologist out of 5 who have ever used the word "very abnormal" when it came to Ellie's EEG results. We have heard "abnormal" to "only slightly abnormal" and I am quoting descriptions. So to hear "very abnormal" was a bit of a blow. I asked him about the other results which seemed to fluctuate. He said he looked at all the EEGs they had on record (which may not include the work done out in Cedar Sinai, LA) and said he couldn't account for what other Doctors told us, but that all of them were very abnormal. He continued on saying that if we wanted to take her off seizure meds he would want us to sign a waiver that we were doing so with informed consent and against doctor's recommendations because she would be at such high risk.

See, straight up.

I am not really surprised, just struggling with the hope I had that one day she might get off those damn meds that make her so tired. And I will hold hope still, like Dave does that some day they will find a way to help the damaged areas of her brain to recover.

But for now we have to find the right tempo between seizures and fatigue. The plan moving forward is to see if she is still dragging in one more week. If she is we will lower the dose slightly.

I am also lobbying (and it is like lobbying because I have made 3 calls already to this effect) to get neuro doc to chat with GI doc who says the Cisipride effects the levels of her Depakote...easier said than done.

Some days I hate all of this. Ellie is a bright shining light. Curious all the time and never misses a thing. She always has an opinion and wants to play and move, move, move. So to see her wanting to sleep all the time, have continuous dark circles under her eyes and be half hearted about play just plain sucks and sucks some more.

But as always with Ellie the gentlest approach works the best because like I said before, she's sensitive.

So we wait and see and hope that at the right level she can be her active, inquisitive self while keeping the electrical storms away.

6 comments:

Danielle said...

Wow that is such a hard place. Such a fine line. Sigh. You are a good mom. That I know.

Bird said...

I'm in a very similar place. I'm just now wondering how much the phenobarb makes Charlie sleepy--am I doing him a dis-service? We have abnormal activity on one side and no sign of seizures. It's just so hard. You don't want them to be out of it, but you don't want them to have seizures either.

Anonymous said...

Lots of warm and positive thoughts your way from your friends in NY (now back from MV)
Rick

Laura said...

I hope you find the right combination of meds for Ellie so that her seizures can stay under control and that she can still be a child.

Bird said...

Wanted to tell you that we've been experimenting with Slippery Elm since you said you were using it. I have a powder for his oatmeal and also a tea blend that's intended for pregnant women. The tea is working very nicely. Thanks for the suggestion!

23wktwinsmommy said...

Thinking of you guys...I hope you find that delicate balance for your beautiful Ellie.
By the way, don't we live relatively close by? Why haven't we met yet?
I don't know if I ever had your email to add you after we went private. SOrry about that. But email me if you'd like: rapa.stephanie@gmail.com