Wednesday, July 23, 2008

A bit of history

Many of you coming to the blog already may be familiar with Hollis's history, and why we had to go through this radical surgery, but for the folks just swinging through, I thought I'd give a little backstory to my brave girl.

Hollis was born with her seizures, due to a stroke she suffered while I was pregnant with her. We did not know she had the stroke at the time, but found out after she stopped hitting her milestones at about 4 months. The pediatrician we had at that time told us to wait and see what happened until 6 months. She became progressively more limited on her right side, and her arm tightened into a bicep curl and fist: we knew something wasn't right.

At seven months, she had her first MRI, and was diagnosed with a stroke, which started from a clot from her middle cerebral artery. The stroke more or less destroyed left side of her brain, leaving it scarred, and much smaller than the right side. This brain damage is what caused her seizures, left her very limited on her right side, with global developmental delays.

Hollis's seizures started off as "drop attacks", or atonic seizures, where the body quickly loses all tone, much like what would happen if a robot was switched off. If standing, she would fall, and crash into anything in her way. These drop attacks are very short, but extremely forceful. She has had more than her share of black eyes and bumps on the head in her 8 years. The seizures then progressed to tonic (stiffening), lasting about 30 seconds, and then tonic-clonic (the grand mal seizure most folks are familiar with) lasting up to 90 seconds. What started off with bumps on the head progressed into ambulance rides and multiple emergency room visits for clusters of seizures drugs couldn't break up.

We have gone through many different treatments including 7 anti-epileptic drugs, the ketogenic diet, and the vagus nerve stimulator. These made a dent in the number of seizures, which were at about 40-50 a day, but she was still having 6 - 12 a day. We eventually got to the point where surgery was the final option, and of course, we had been trying to avoid it because it is terrifying to think of putting a child through such an operation. At our consults for whether she'd be a candidate for epilepsy surgery, her neurologists and neurosurgeon said despite the radicality of the surgery, we'd be asking ourselves afterward why we didn't consider it sooner. I don't know that we would have changed our timeline, but we are definitely happy with the results we've seen so far!

Included are some of our favorite pictures of our girl, at 18 months, four years and seven years. The last photo summarizes Hollis's personality to a "T": "sassy"!

Here are two great links to find out more about epilepsy and types of seizures and syndromes. Below that is a link about childhood stroke.

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