If you would've asked me 6 months ago, after an extremely difficult hospital stay, where we attempted to put Jameson on the ketogenic diet for his epilepsy, if I would ever put him through that again, I would've said HECK NO!! But after moving to a new neurologist and dietician, at a new hospital, we have initiated one last attempt at this diet that has changed so many other kiddos lives with hard to treat epilepsy.
We have come to a place in Jameson's seizure management, where we are starting to run out of options. I shouldn't say "run out of options", but we are getting to a place where the only options left are palliative. This means that since Jameson has such a difficult to treat form of epilepsy, and because he's tried and failed so many different medications, many of our options now are in the form of surgery. We have had three different neurologists now, from three different neurology programs across the country, tell us that they believe a Corpus Callosotomy is the next best treatment option for J. A Corpus Callosotomy is a major brain surgery that involves the surgeon basically cutting the two halves (or hemispheres) of the brain apart. The corpus callosum is a band of tissue that connects the two sides of the brain and allows communication across it. The goal of this surgery would be to limit the spread of seizures from one half of the brain to the other, and hopefully reduce them altogether.
Obviously, this surgery terrifies me. Especially when the doctors tell me there is less than a 50% chance of it working. Hence, why we are giving the ketogenic diet a second chance. Thankfully, our new team at the U of Iowa has let us try it slower this time, at home, and with a blended food diet. All things that we weren't able to do last time, and this has made a huge difference in how J has been able to tolerate it.
We are a little over 2 months in, and I have seen some positive impacts. He seems to be a little more awake and alert some days, which I love to see. I haven't been able to see much of an impact on seizure reduction yet, but we are still working on it. If we could get just enough seizure reduction to be able to wean one of his medications, then we would be able to try another one in the future. (He is currently on 4 seizure meds, and that is the maximum we can do safely)
Pray that we can continue to get some good results, and that eventually we start to see some seizure relief. While the surgical options are good to know about and do research on in the case we ended up where we felt we had no choice, I don't want to have to go down that road anytime soon.
Hope everyone is staying safe through this crazy COVID world, love to you all! :-)
Alli and J-man
