Monday, September 21, 2009

A New Hope

First, some background:

Elisabeth was diagnosed with Infantile Spasms in May of last year; she was 7 months old at the time. Up until that point she was doing quite well with her development (considering the significant brain damage from the hydrocephalus). Milestones were being reached; sitting up, rolling over, and starting on solids. Things were going well.

But then the dreaded spasms started. Infantile Spasms are a devastating form of childhood epilepsy. While they don't look like much from the outside, they cause great damage to the brain.

Elisabeth soon began to regress. All the milestones that she had hit became a distant memory. We desperately began searching for a cure; going through a long list of medications, treatments, and diets. Nothing worked.

And then last fall we started her on her current epilepsy med; Depakote. We immediately saw a reduction in seizure frequency and as the seizures slowed she seemed to come back to life. She went over 50 straight days with no spasms, and oh the progress we witnessed in that time period! Because her brain had a chance to rest and to heal, she once again began to smile, and laugh, and eat yogurt, and roll, and sit up. It was during those 50-beautiful days that she gained her first bit of vision and saw the world around her for the first time.

Unfortunately, the seizure-free streak didn't last forever. The spasms returned; not with the same frequency as before, but they are a part of everyday life for Elisabeth. Elisabeth has continued to progress developmentally, but at a very, very slow rate.

But we settled with the Depakote anyway, for we had hit a dead end. There was nothing left to try....until now.

Several weeks ago, on a Saturday morning, the phone rang. It was Donald's Aunt Cindy who lives in the Seattle area. She was calling to tell us that she had read an article in the paper stating that the FDA had just approved a new Infantile Spasms medication. My heart leapt at the news. There was a new hope.

As it turns out, I had read about this medication, Sabril, before. It has been available in other countries for years and years, but the FDA had never approved its use in the US.

This past Friday, Elisabeth and I drove to Spokane to meet with the neurologist about starting her on Sabril. He agreed that this is definitely something that we should try for Elisabeth.

So that's the good news.

Now for the bad news.

Sabril comes with one very severe side-effect; vision loss. This side effect is what kept the FDA from approving it for so many years in the US. And because of this severe side effect, we have to jump through major hoops to get Elisabeth approved for its use. Trust me, it's not as easy as driving down to the local Walgreens and waiting for 20 minutes. Basically, I had to sign my life away; 'yes I understand that there will most likely be vision loss; yes, I know that it is permanent vision loss; yes, I have tried everything else; no, I will not come back and sue the manufacturers of Sabril; yes, no, yes, yes......' (There was a lot of signing to a lot of statements)

Elisabeth's doctor also had to complete a stack of papers to become an approved prescriber and Elisabeth will be required to have an eye exam, as well as follow up eye exams every 3 months.

Donald and I aren't too concerned about the vision loss. We strongly believe that the benefits will outweigh the risks. Based on the progress we saw during those 50 spasms-free days last fall, I know that Elisabeth would improve leaps and bounds developmentally if we can rid her of this horrible form of epilepsy.

Elisabeth already has severe visual impairment, so that made it easier for Donald and I to make the decision. Not to make it sound like we don't care about her vision, because we do. But I have the comfort of knowing that I am not taking something from her that she already had. It's true that Elisabeth is no longer blind, but her vision is far from normal. I would say she doesn't see anything past a foot or two. And while she has gotten quite good at spotting most objects placed in front of her, I am not sure with what clarity she sees them.

It will be a few more weeks (or months) until she is given the go-ahead to start the Sabril. I am so grateful that the FDA approved this medication. I hope that this will finally be the answer and that Elisabeth will be able to live seizure free at last.


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