Sunday, March 13, 2016
I spoke with a woman last week whose baby recently had been given phenobarbital as a first-line defense when the baby developed seizures. Twenty one years ago, I stood in the hallway of a New York City hospital and expressed concern about the effects of phenobarbital on the developing brain of my own baby. What's a couple points drop in IQ? the doctor said, and that was that.
I spoke with a woman a couple of weeks ago whose baby recently had been given keppra as a first-line defense when he developed seizures. The doctor said that a small percentage of people taking the drug get very angry and irritable, she said. Yes, it's called "keppra rage," I told her. About ten years in to her diagnosis and shortly before it was approved for use, Sophie took keppra. It did nothing for her seizures, I told the woman, but she never developed any rage. Last night, the woman texted me that the baby had another seizure. He has a cold, the mother told me. I had hoped the medicine would work. I said, Viruses are notorious for precipitating seizures. All bets are off.
My friend Allison has been treating her son with cannabis from the get-go. Would I have done so had I been presented with the option? Did I feel resentful of nineteen years, wasted? No more I am not a doctor, but...
Yes, she said. Yes, I would. Yes.
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I'll comment first on your gorgeous children! Now I'll go back and read your words.ReplyDelete
why wouldn't someone try cannabis? Oh, right, Reefer Madness. Keep up the good work; you're going to save a lot of kids and their families with your educational message.ReplyDelete
After your educating me, there is no question that yes, I would too if in the position to have to make such a decision. The photo of your children is breathtaking. Pure love.ReplyDelete
I imagine it's scary when your baby or child is so young and we have such faith in "modern" medicine. I think Sophie and others like her are proof that cannabis works where traditional pharmaceuticals fail.ReplyDelete
What a touching image that is.ReplyDelete
Kepprage! I was a monster on Keppra. Apparently at my finest moments i'm a thrower. (I found unopened cans of Keystone light to be particularly satisfying.) For no reason i would be seething, seeing red, smoking from the ears and nostrils. (It probably didn't help that in addition, it seemed to precipitate in me the unfortunate side-effect of weeks upon weeks or projectile vomiting. [Maybe it was just being hangry all the time.] It never abated. It was more than 2 mos before i could get the neurologist to let me d/c it.) Gah. Sorry!ReplyDelete
I love that picture. I still can't get over how much Henry reminds me of my own sweet brother.
Lovely kids...the rest? Not so much but at least people are communicating and sharing, as are you. Choices are important and maybe another child will be spared what you and Sophie have endured.ReplyDelete
I agree with my whole heart. "What's a few IQ points?"ReplyDelete
And as if that was the only problem. Dear god.
Your beautiful, beautiful children. Sophie's eyes. Henry's strong big-brother arms.
They crack my heart right open.
A breathtakingly beautiful picture - so much love, so much beauty.ReplyDelete
That photo. Your post. I am undone.ReplyDelete
Carlie's first treatment was phenobarbital at the 6 months old. If I could only go back in a time machine with what I know now... :(ReplyDelete
The one and only platitude that I put any faith in is that we did the best we could at the time.ReplyDelete
You have done everything you have done with hope and love, with faith and fortitude.
And that photo and the others from Sophie's birthday are just so beautiful. xo
I do think that some part of medical school ought to be devoted to witnessing the effects of these powerful drugs on actual human beings. After all, it is one thing to "know" that side effects can include lethargy or rage or various other things, but for future prescribers to actually see someone in a homicidal rage due to a medication, or to be in the presence of someone who has a severely impacted bowel just might make them ask more questions and think twice about prescribing medications so easily.ReplyDelete