One of my favorite bloggers has written a post HERE.
Instead of commenting, I'll let you read it. And then you can comment here because he has closed his own comments.
I will warn you that the language is pretty bad but oh, so PERFECT. I couldn't have said it better myself (although I think we're one of those families that he's talking about). And if he reads this blog I hope he knows that no matter the severity of the illness, epilepsy is a nightmare, surpassed only by the drugs used to "fix," "cure," or "alleviate" it.
I'm glad he wrote the post, unleashed that anger, that language. It fires me up. (remember this?) And I hope his girl gets some relief.
"...surpassed only by the drugs used to "fix," "cure," or "alleviate" it." I couldn't have said it better, myself. Thanks, Elizabeth.
ReplyDeleteHaving just witnessed drug-induced clinical delirium no less than two weeks ago with my son in the psych ward, where he still is today, I will have to say that I can absolutely relate to feeling horrible about providing so much medicine to a child. (By the way, the delirium wasn't caused by the administration of drugs at home, but the literally insane dose of sedatives they had to give him to quiet him in the ER.)
ReplyDeleteMy son, who has had one seizure that we noticed, is currently being weaned off Depakote. We've been using it as a "mood stabilizer." Until I read that Newsweek article, I didn't realize how much it slows someone's cognitive ability. Glad to have that getting washed out, if it's not needed.
I'll agree that the epilepsy articles in Newsweek presented a very bleak perspective. I know -- who reads an article on a disease and feels uplifted by it? I get that it's "bad news." But they couldn't have made things sound worse.
When it's your kid, it's a market of one. Overall stats seem overwhelming, and you care about what can be done for your kid and your situation. We all have hope to overcome the odds. On that point, in my estimation, they missed the boat.
Thank you for this link. I love his writing voice, his passion and his honesty.
ReplyDeleteWe're not dealing with epilepsy, just basal ganglia disease of unknown etiology (in the absence of any real diagnosis). But at one time, Robert was on 6 different meds, most of them given more than once a day. So the only thing I can add is my feeling that the word "f*ckin'" was not used nearly enough.
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