Coincidence?

As I've mentioned in some previous posts, Hollis has been eating extremely well since the week after the surgery. Eating has been a huge problem for her since about this time last year. She suddenly decided to stop eating altogether for about 2 weeks in July 2007, and when we finally were able to get her to resume, she would only eat a few items: pepperoni and sour cream and onion potato chips were her staples. Because she ate so little and because it had almost no nutritional value, she lost about 10 pounds in a month's time, which was equivalent to 20% of her starting weight - and, she was not a chubby kid to start with. She also lost about half her hair.

We always assumed it was related to one of her seizure meds, Topamax, which has a known side effect of decreased appetite. Unfortunately, this happens to be the most effective medicine she uses, as we found out when we took her off the Topamax for the surgery evaluation/seizure monitoring, and she promptly had 55 seizures in one day. So we were kind of stuck.

What I never really considered was the constant seizure activity she was having could have been making her nauseous. There are many different symptoms that people can suffer related to their seizures, (a list is available here), but because Hollis is nonverbal, the only symptoms we were positive she had was the exhaustion and post-seizure behavior of anger and frustration. Perhaps now, without all the excess electrical activity going on, Hollis's tummy is feeling better.

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.

www.epilepsyfoundation.org

www.epilepsy.com

www.chasa.org