Emma's Grace

As you all can see, I am horrible about doing these updates lately.  Mostly, I think I’ve been avoiding it because I get tired of thinking about it.  But I really need to keep up with this.

Anyway…

Emma is still having seizures.  We’ve increased her Topamax, which didn’t help.  She was up to 75mg in the morning and 90mg in the evening.  That didn’t seem to be working though.

Then we had our little trip to the hospital.

After the holiday week was over, and getting in touch with her neuro, we decided to decrease her Topamax back down to 75mg twice a day.  We also introduced Emma to Trileptal.

An intro dose of 0.5ml was give twice a day for 4 days.  After that we moved her up to 1ml twice a day.  That didn’t seem to be doing the trick either.  We increased it again to 1.5ml twice a day.  Again, no real change.  We have increased her dosage to 2ml and then up to 2.5ml twice a day.  Still no decrease in seizures.

Tomorrow, the 23rd, we will go in for an EEG.  We’ll see what that tells us.

Emma’s seizures have been changing since before Christmas.

Before our trip to the hospital, she would make chewing motions with her jaw, scrunch up her face, and drool a lot.

And then there was the seizure that caused me to take her to the hospital.  I found her in bed, with her eyes fixed up and to the left.  Her forehead was twitching.

After the hospital trip, she was relatively seizure free for a couple of days.  Sadly the seizures came back, but in a different way.  These seizures were similar to her original seizures from over a year ago.

She has been doing a different things with each seizure.

At first, her hands would shake.  Her arms would bend and go up, but she would tremble.  It was almost indiscernible.

Now her arms bend and her hands go up.  Sometimes her arms fully extend, sometimes they don’t.  She trembles.  Her face scrunches up.  Her left leg bends, sometimes it doesn’t.

She seems to be cognitive during some of the seizures.  And she isn’t really sleepy after each one.  She’s quite happy and active some of the time.

But worst of all….she has started to jackknife.  A classic IS seizure.

There were even a couple of times where she would cry out after a seizure.  Also typically IS.

I don’t know what the EEG is going to tell us tomorrow.  But I have a feeling the IS is back.

And so will the Vigabatrin.  Hopefully it won’t damage her already diminished vision.

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