Thursday, December 29, 2011

Collin's Countdown of Awesomeness: #3

#3: Freedom

Seizure freedom, to be precise. And seizure med freedom.

On June 22 of this year, after an incredibly rough month that included his first stomach bug, hospitalization from ketoacidosis, and moving out of his house for 3 weeks due to a serious home renovation project, Collin celebrated one full year of seizure freedom. It was a day we had been fairly sure would never come. His seizures were intractable - they did not respond to medication. Rather than getting relief, he only endured horrendous side effects that we still deal with to this day. Even when we found one miracle drug (Sabril) that his Infantile Spasms responded to, his seizures came back a few weeks later in a new form. So, while we continued to hope against hope for an end to (or even a break from) the exhaustion and heartbreak of seizures, we simultaneously prepared ourselves for the possibility that it would never come.

And then we found the ketogenic diet.

It was a rough start, but we stuck with it and even took the risk of weaning Collin's multiple seizure meds with the support of Dr. Awesome.  We switched to a blenderized, whole-food version. We tweaked the ratio. We added protein supplements. Slowly, the periods of rest between episodes began to increase. On June 21 of 2010, right around the time of his last dose of clonazepam, we witnessed Collin's last seizure to date. It was a doozie. Actually, a big fat cluster of doozies. I cried and cried and had the doctor on the phone trying get some guidance. And then they never came back.

We don't take for granted this precious gift. Many kids never find complete seizure control. And Collin's may come back one day. But we have been given this amazing time of freedom, and so we celebrate.

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