Wednesday, January 28, 2015

Dispatch from the Revolution: Cannabis Update and Contortions

New York City, 1996

to Christy

When Sophie got home from school today, I noticed that she'd once again not drunk much of anything. I gave her the afternoon dose of Charlotte's Web and then lay down next to her with one leg draped over her legs, my strong peasant left arm holding her left arm gently down and my strong peasant right arm wielding her sippee cup. I placed it on her mouth and spoke gently but firmly about her need for liquid and dripped a few drops in. She swallowed and then pursed her lips and sucked on the cup. I did this over and over for the next twenty minutes, all while listening to Oliver who was sitting in the beanbag chair in the window chatter about Teslas and the video of a brother and sister singing one of the theme songs to the movie Boyhood. At one point, my position became torturous when Oliver leaned into and over me to show me a video, and because I'm that mother who is aware of the needs of the siblings of the special needs kid, I simultaneously forced the Special Needs Kid to drink and craned my neck into an awkward position so I could respond appropriately to The Sibling. I might have even remarked on the absurdity of it all, and Oliver agreed.


I kind of want to back up here, because this post is supposed to partly be an update on cannabis. Sophie has now been taking the Charlotte's Web Hemp Oil at the higher ratio for a bit more than a month. We've also tinkered with the dosage and found something that is working for now. We're still not in the incredible spot we were last year at this time when Sophie's seizures disappeared for weeks at a time, but we might be close. The stuff works for her. We're also continuing the Onfi wean, and just as everyone who's ever visited here knows, the benzo wean is an ugly, ugly process. Today, I had a lovely and very informative conversation with my friend Christy who writes from Maine about her own struggles with her son Calvin's refractory epilepsy at Calvin's Story. As I walked the aisles of Trader Joe's, Christy suggested that the drinking and eating difficulties could very possibly be a result of the benzo wean, that forgetting how to swallow and drooling is a side effect of the drug and can increase when the drug is weaned. I think in that moment I got so excited and distracted that I threw in the chocolate babka and the chocolate cookies and the cinnamon bread, all of which this family does not need. So, later, when I got into my contortionist pose and coaxed Sophie to drink, I felt infinitely more patient with her and far less insane. My mind wandered to the time when Sophie was on another benzodiazepine, the hideous Klonopin and how it caused anorexia. My mind drifted to my helplessness then, how I watched her lose about 20% of her body weight and brought her to an interminable number of specialists who had literally nothing to say or suggest except for the eminent gastroenterologist at a prominent hospital who threatened a feeding tube. To make a long story short, I weaned her from the Klonopin, her appetite came back, she got into tip-top shape with the help of a naturopath and -- well -- here we are.

What's the point of all this? You do what you have to do. Light comes in through the cracks, even from as far away as Maine. I'm going back into Sophie's room to help her learn to swallow by coaxing a bit more liquid into her. Then I'm cutting a big old piece of chocolate Babka and listening to this:


  1. Yikes. The drugs. The side effects of the drugs. The side effects of weaning from the drugs. Time for that zippy cup of gin again, my dear. For you. Not Sophie.

  2. You know. The doctors? Mostly not.
    Lord but you are the best mother. Not only to your "special needs" child but to all of them.
    Enjoy that Babka. And thank you for linking me to that video.

  3. See? Connection. That's how we do it. Love that you were talking to another mother as you filled the cart at TJ's. Love that she had a thoughtful perspective.

    Love you.

  4. I will never as long as I live get over the fact that a drug that can make you forget how to swallow is sanctioned to treat Sophie's epilepsy yet cannabis oil is seen as extreme. You have to be a detective to navigate this. Sifting through the clues. Finding the connections. Contorting yourself for your children. You are such a good mother.

  5. Well, at least you have some hint of what might be going on with Sophie. I continue to be amazed at how hard it is to get OFF certain pharmaceuticals. I suppose there's every reason to believe the Cannabis oil may become more effective once she's past this weaning stage. Don't you think?

  6. I hope the oil works for her...Hugs to you both...

  7. Years ago, we had the gastrostomy solution thrown at us by the doctors. Even our beloved pediatrician to whom we've gone for eternity assured us it's a great and harmless. At that time, C. had been through six weeks of status epilepticus with the help of a feeding tube which remained some time afterward too. By then it was imperative to remove the tube and a gastrostomy was the only solution we were offered. Somehow I had the gumption to withstand the pressure and work for weeks getting C. to relearn the art of swallowing. I'm sure I couldn't pull that off today. My reserves are depleted.

    I hope you manage to win this round.

    Oh, and that video clip was beautiful. I've shared it with my gang.

    PS What is Sophie's cannabis dose/kg. now?

  8. can't help but notice how luminous your eyes are then and now. peasant arms, eh? your eyes remind me of Princess Diana's eyes, big wide wondrous eyes.
    Like the eyes of goddess Athena, described as being especially bright, keen eyes. See this and THIS. and of course, this.

  9. These two are awesome for two reasons. First, they sound amazing. Two, they seem to get along! I didn't know that siblings cold get along. Very curious.



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