One of the things about shifting Evan on and off anti-epileptic drugs that always surprises me is the side effects we see, or more frighteningly don't see. It is not uncommon for a drug to have some seizure control for a couple weeks and slowly the seizures ramp up again. The drugs all effect him differently, causing sleepiness, aggressive behavior, insomnia, cognitive regressions or just a general dulling of his personality. The thing that makes it tough is that the changes happen slowly over time, so they are easy to miss.
When we notice the differences in Evan, we start wondering if it's the drug or a side-effect of the seizures themselves. Only when he comes off a drug do we really see clearly what the real culprit was.
We just completed a wean off Topamax and it's astounding to see how different Evan is now. I feel like we did him a real disservice keeping him on that one for as long as we did. He was only on it a few months but it really slowed him down mentally. In the last week we've seen him become much more engaged and talkative...actually he doesn't shut up now. He's creating imaginary games about going to the moon in his rocket ship and has his attention span back. He hadn't been playing with his trains as much and now he's at the train table for over an hour at a time. He's having long and involved conversations with us instead of one or two sentence conversations.
I'm happy to see our son's true personality is back, I just wish we'd pulled him off Topamax sooner.
When we notice the differences in Evan, we start wondering if it's the drug or a side-effect of the seizures themselves. Only when he comes off a drug do we really see clearly what the real culprit was.
We just completed a wean off Topamax and it's astounding to see how different Evan is now. I feel like we did him a real disservice keeping him on that one for as long as we did. He was only on it a few months but it really slowed him down mentally. In the last week we've seen him become much more engaged and talkative...actually he doesn't shut up now. He's creating imaginary games about going to the moon in his rocket ship and has his attention span back. He hadn't been playing with his trains as much and now he's at the train table for over an hour at a time. He's having long and involved conversations with us instead of one or two sentence conversations.
I'm happy to see our son's true personality is back, I just wish we'd pulled him off Topamax sooner.
3 comments:
Hey Lisa:
I've just read through some of your postings and I've gotta tell ya -- as a mother of 2 myself -- I am amazed at your strength, humor and character. I'll be thinking of you and your family and will see you in '08.
All my best,
Elaine
Lisa. I wish there was a book that gave all of us answers for how to raise our kids, much less something that told you what was right and wrong with how to handle Evan. You two are making many many great decisions and I hope in the next week, you remember that. All the best in New York. We will be thinking of you. -Ken
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