Part II, because we finally did it.
A week later than planned but, hey, why rush through life, right?
No, seriously, the Blue Jay was just so irritable and out-of-sorts last weekend that we decided to wait another week. And so we did. And here we are. So for anybody wondering what the heck I am talking about, it goes something like this.
The Blue Jay, you see, has epilepsy. Has for a very long time, like the past 13 years. And its been a very long, very rough ride for the most part. When 11 seizure meds failed to even touch her seizures (and only gave us some nasty unwanted side-effects) we finally tried the ketogenic diet in 1997. It was truly a miracle, a gift from God, as the Blue Jay went seizure free for the first time since the nightmare began.
We had a good run there, of almost 2 years. Ran into some problems, lost control. Regained it again and she went over a year and a half seizure free. Another miracle. Then we lost control again and at that point she started really fighting the diet again. She had fought it hard in the beginning, resulting in nine months of hell, but we had struggled through through that. The second time around, when it no longer seemed to be working for us after six long years, we decided it was time to move on.
Although I should say that I am and always will be eternally grateful for the keto diet. It was the first and only thing that ever gave the Blue Jay (and by extension, us) relief from the seizures. It was more than worth the work, the time and the effort that went into it. Unfortunately, the diet tends to get a short shrift sometimes in medical circles. Its undeserved. Although its must easier to 'pop a pill', many times those pills don't work. And when they don't, the ketogenic diet can be your own private miracle. The best way I know of to describe it is as a gift from God. And we will never forget that.
But move on, we did. And we found that first (and only) seizure med that has ever worked for her. Her seizure disorder is very unusual in that she can go up to six months without a one, but once she starts they cluster and she ends up in the hospital for 10 days to two weeks. During which time we can have 40 (a good bout) to 80 (a bad bout) seizures. Accompanied by some lovely regression in her skills. And a week of wild craziness once the seizures are done. Not too pleasant for any of us, let alone her.
But we have a good run with this last drug. Not a sentence I thought I would ever find myself even thinking, let alone saying or typing. So after two years without even a single seizure and two and a half years without a hospitalization, the decision was made to wean the drug. Slowly. Very slowly. Its taken three and a half months but she is now off all seizure meds.
Hence, the end of the line.
Which is a little exciting. And a lot scary. Given her history, we will have to wait quite a while before we can make any pronouncements as to those nasties being done and gone. And truly, with epilepsy, I am not sure that you can ever really say that. So here we sit with our fingers, toes, and eyes crossed. And asking all our friends to pray. While we wait.
But now... For now. It feels kind of good. Like the end of the line might just be a good thing. Maybe.
A week later than planned but, hey, why rush through life, right?
No, seriously, the Blue Jay was just so irritable and out-of-sorts last weekend that we decided to wait another week. And so we did. And here we are. So for anybody wondering what the heck I am talking about, it goes something like this.
The Blue Jay, you see, has epilepsy. Has for a very long time, like the past 13 years. And its been a very long, very rough ride for the most part. When 11 seizure meds failed to even touch her seizures (and only gave us some nasty unwanted side-effects) we finally tried the ketogenic diet in 1997. It was truly a miracle, a gift from God, as the Blue Jay went seizure free for the first time since the nightmare began.
We had a good run there, of almost 2 years. Ran into some problems, lost control. Regained it again and she went over a year and a half seizure free. Another miracle. Then we lost control again and at that point she started really fighting the diet again. She had fought it hard in the beginning, resulting in nine months of hell, but we had struggled through through that. The second time around, when it no longer seemed to be working for us after six long years, we decided it was time to move on.
Although I should say that I am and always will be eternally grateful for the keto diet. It was the first and only thing that ever gave the Blue Jay (and by extension, us) relief from the seizures. It was more than worth the work, the time and the effort that went into it. Unfortunately, the diet tends to get a short shrift sometimes in medical circles. Its undeserved. Although its must easier to 'pop a pill', many times those pills don't work. And when they don't, the ketogenic diet can be your own private miracle. The best way I know of to describe it is as a gift from God. And we will never forget that.
But move on, we did. And we found that first (and only) seizure med that has ever worked for her. Her seizure disorder is very unusual in that she can go up to six months without a one, but once she starts they cluster and she ends up in the hospital for 10 days to two weeks. During which time we can have 40 (a good bout) to 80 (a bad bout) seizures. Accompanied by some lovely regression in her skills. And a week of wild craziness once the seizures are done. Not too pleasant for any of us, let alone her.
But we have a good run with this last drug. Not a sentence I thought I would ever find myself even thinking, let alone saying or typing. So after two years without even a single seizure and two and a half years without a hospitalization, the decision was made to wean the drug. Slowly. Very slowly. Its taken three and a half months but she is now off all seizure meds.
Hence, the end of the line.
Which is a little exciting. And a lot scary. Given her history, we will have to wait quite a while before we can make any pronouncements as to those nasties being done and gone. And truly, with epilepsy, I am not sure that you can ever really say that. So here we sit with our fingers, toes, and eyes crossed. And asking all our friends to pray. While we wait.
But now... For now. It feels kind of good. Like the end of the line might just be a good thing. Maybe.
3 comments:
Ohhhhhhhhhh, MMC! That is great, marvelous, fantastic, wonderful! Hooray for Blue Jay! No more butter and peanut butter combos - although, personally speaking, I rather enjoyed that.
What a lovely early Christmas gift.
I'm very happy for you and the crew.
tam :)
oh, by the way, I'm stupid. I was whining about being anonymous and all this time, all I had to do was type in a nickname.
I'm such a weiner.
Thanks, my friendly neighbourhood weiner. ;-)
Actually, just to be clear, the Blue Jay has been off the diet for quite a while.... two to three years. But now coming off the drug too... yeah. Thanks! A trifle scary though.
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