Tuesday, May 5, 2009

Standing Still...

Today was a much anticipated day.

We had our third electroencephalogram (EEG). This was originally scheduled as our first follow-up EEG after being discharged two weeks ago. However, since we got in for another one last week, this wound up being EEG #3.

Dr. Le Pichon didn't see any improvement from the second EEG to today's. Now, that certainly isn't terrible news, but it's not the good news that we were kind of getting used to. We're not really seeing the decline in the clusters that he'd like, so we're going to check back in on Friday and let him know if we're seeing any significant changes. If not, we're going to up our ACTH dosage again.

Here's the scoop on what we're looking for. The drug (ACTH) should knock out these spasms to a point where they're either completely gone or almost gone. If that doesn't work, we're probably in for a rough go of it.

Either way, these spasms will eventually go away on their own. However, if that happens, she's at a much greater risk of all different types of seizures as she grows up. Seizures that are varying in type which makes them very difficult to treat. These would be accompanied by an unknown level of developmental and cognitive delays. Not a good plan at all. So, our hope is that this drug will really begin to take hold and get rid of this nasty stuff.

We'll be back at CMH in two weeks for another EEG and an appointment with Dr. J.B. Le Pichon at the neurology clinic.

We're praying that there is significant improvement. We'd appreciate it if you could do the same.


Laura S. said...

Poor little Kylie... I bet she hates all of this testing. I will pray for you guys every day. And Jody, never feel bad for asking me things... I really like you guys, and enjoyed you. You can contact me anytime. :)

Anonymous said...

her bow is adorable.!


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