Owen had his last appointment with the neurologist he has been seeing since he was two. We will call him Dr. A.😉 This has been a long time coming. He didn't treat Owen like an individual, let alone an individual he cared about. Every appointment was like starting over again; he could never remember what we discussed. He was also extremely arrogant; he once told Gavin and I that he was number one in ketogenic diet research and this doctor we were seeing at Johns Hopkins was number two (WHAT?!) Lastly (among many other problems I won't get into), he didn't value my opinion as Owen's mother. I see him every day and have that thing called "mother's intuition," but my comments went in one ear and out the other with that guy.
So, during Owen's last appointment with Dr. A, he introduced two options for Owen to try. He informed us that these are end of the road medications and are not what we would initially try; however, since we are getting a little desperate, these are our two options. Option #1: felbamate--Owen would have to get his liver and blood checked every other week because this medication is so potent it could kill him. Option #2: can't remember the name, but it was almost certainly going to cause him to lose his peripheral vision permanently. Yep, those were our options. I know, horrible. We opted for choice #1, reluctantly.
It was awful. Owen was on felbamate for a week and a half. His seizures went crazy, he was out of it, he began running a fever. I was freaking out for lack of a better phrase. I took him to get his liver and blood checked; luckily, those results were normal. Needless to say, felbamate is not Owen's "drug of choice."
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