Missyj
Moderator
Registered: 11/08/07
Posts: 51
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Reply with quote | #1 |
My youngest daughter has epilepsy, and our family is still learning to cope. Drugs work for a time, then her body seems to adjust (it's called the "honeymoon effect").
I keep reading about the ketogenic diet, which is basically a modified Atkins--severe carb restrictions, high fat. I've avoided the idea, since it seemed so restrictive for a 7-year-old.
This week she's had several seizures that seemed externally mild, but the after-effects (post-dictal period) are worse than the event itself. After a seizure she can't talk for over an hour. She's confused and disoriented. We've increased her medication so much between the drugs and the seizures she seems to be slipping away from us.
2 out of 3 kids on the modified Atkins diet experience at least 50 % fewer seizures. 19 % are both seizure-free even without medication. Many more are able to reduce their medicines and still have seizure control.
2 out of 3. I think those are good odds.
Sarah thinks she wants chocolate and pretzels and cake. I keep telling her no, and it breaks my heart. I know she doesn't understand. Plus it's an awful lot of work to do all that chopping and cheese grating. It would be simpler to hand her a dough-nut.
However, I love her. I hate what seizures are doing to her. I will do anything to help her, even if she's mad and doesn't understand. I can see past the candy bar and think of the (possible) long-term affect so many drugs might have on her body.
I used to worry about what was fair. I wanted her to have everything her sister had. However, life isn't fair. It's not fair she has seizures when the rest of us don't. Right now that's immaterial. As her mother I shouldn't do what's fair, I should do what's best for her. It's horrible for everyone, but for me, it's how I love her.
How many times have I thrown a fit when God hasn't given me whats fair? What seems the simplest solution? I am so unable to accept it is His love.
With Sarah, I know she can't understand. It's okay if she's mad. I told her today if she can't have something she wants and she hates it, it's okay to say so. We must take care with God to not become resentful, but to let Him hear our struggle while trusting His love.
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