Tuesday, December 24, 2013

CBD Update



It's Christmas Eve, and we're three days into the new high CBD formula. We started on a small dose and will raise it on Sunday, but so far, so good. I haven't seen any big seizures, and the small ones are muted and quick. I've noticed that Sophie is a bit agitated and am wondering whether her other drugs are the culprit. I've learned that the interaction of benzodiazepines and CBD can be problematic. Some kids see an increase in drowsiness -- Sophie will, of course, probably be the opposite of that, so today I'm thinking that we'll begin the wean process a little earlier than I had planned. Not today, but soon. A lot of the people who are trying high CBD with their little ones have kids on multiple drugs, and many of them begin the wean right away. We're cautious weaners around here -- have withdrawn enough drugs from Sophie's poor system enough times to dread the horror of it. You have to do it slowly, by infinitesimal amounts, and wait for the response. You have to sit tight during the increased seizure period, use rescue medications, refrain from giving that tiny bit back. You have to be armored against dragon fire, maybe become a dragon, retreat into a cave with a maiden in your jaws. About ten years ago, I quit adding a third drug to Sophie's two-drug cocktail unless one of the two other drugs was weaned, and I've never regretted this decision despite the hardship of the wean process. When I hear of these kids on three-plus drugs and still seizing, I feel sick to my stomach and angry. If it's not working, it's not working, I say. It's not the full moon or getting sick or Venus in transit. It's not working. Take it off. I think it's unethical to keep adding drugs, hoping that the next will be the magical one. That being said, I understand the desperation and therefore made up my own rule: Thou shalt not add a third drug to the regimen unless one of the other two is weaned. I'm hoping that as we wean Sophie from her other drugs (if she continues to do so well!), the CBD will offer some protection, and over the next few weeks, I'll probably mull over it until the moment seems right or I get some signal or my instincts kick in or the virgin gives birth and bears drop out of trees. Now, I'm going to make some tiramisu and cheddar biscuits.


10 comments:

  1. Your instincts, after all of this time, are impeccable. I would trust them.

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  2. Thanks for the update. I think of Sophie often. Like Ms Moon said, trust your instincts. Merry Christmas to you all.

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  3. Impossible to predict all interactions. You're wise to limit the possibilities.

    Hope Christmas is warm and happy for all of you.

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  4. sending hope and good wishes for the success of the CBD, elizabeth. a happy christmas to you and your family; peace and joy surely will be yours in the coming year.

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  5. So happy to hear that things are going well...she is so blessed to have you.
    I hope you and the family have a marvelous holiday and a spectacular 2014!

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  6. Last night a friend told me exactly this same thing about another child and CBD - no big seizures and the small seizures that come now pass very quickly. This news for Sophie brings so much joy to all of us who have come to love her. Thank you for for all the twists and turns and frustrations and pushes and wonderings and wanderings and ALL the other uncountable and unnameable obstacles that have led you to this peaceful place where Sophie can be born into a new life - wonderful!!

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  7. I'm hoping it works well for her. I'm starting the process here. Went to our family doctor who was quite happy to try Katie on medical weed, just not sure how to go about it. I'm hoping it helps my baby girl too. Merry Christmas Elizabeth and thank you.

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  8. "...so far so good." These are good words. Keep wielding that sword for your fair maiden.

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  9. So freaking far behind here! I'm sorry, but I'm catching up now and hoping that the weaning goes well and you are the victor and the gratitude postings I saw titles for are because it's going so well.

    Love.

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