Wednesday, October 30, 2013

Head Down


Never a fair-weather fan

Even though I woke up this morning to the sound of Sophie having a really big seizure, I am encouraged by the last few days. She has had markedly fewer seizures and looks brighter. I guess the brighter part is subjective, and I could possibly be wishing it so, but I've been doing this thing for nearly two decades, so I'm going to go with definitely brighter. Isn't there a whole school of people who choose to be happy? She's brighter. She's having less seizures. There. I typed that in regular font. I feel slightly less frenzied but thoroughly weird. Anxious. I learned at the conference last weekend that about 15% of those who try CBD fail, particularly those who are on other medications or high doses of medications. These kids do better as the medicines are weaned, particularly the benzos (Onfi is a benzo). If any of you have ever weaned a benzo from an epileptic child (or yourself, actually), it's horrific. I've literally weaned Sophie from various benzos over periods of months and even years. I'm reminded that there's still Charlotte's Web to try, if this particular tincture doesn't do the trick. However,  I'm also feeling afraid. The reason for that is all the rumbling on the pediatric cannabis Facebook page about Big Government and Big Pharm -- how they could possibly get their hands on the stuff and make this whole thing a big, giant clusterfuck. I admonish myself not to be a conspiracy theorist, and then I think about our experience with anti-epileptic drugs -- getting them, paying for them -- the whole Onfi clusterfuck (twice, now, I've used that perfect word!!!) that I wrote about ad nauseum on this here blog.

One day at a time. Choose to be happy. Wean slowly, far more slowly than the Powers That Be tell you.

Anywho.

My head is down, figuratively and literally. I blew-dry (or is it blow-dried) my hair this morning, a rare, if not singular, occurrence. I did it like I used to do when I was young. I hang my head upside down and just let that hot air go. This is all part of my transition into cronedom, believe it or not. I'm going to be the crone with great hair. Also, Oliver is taking a mental health day from school which means my mental health is somewhat in question. Henry, god bless him,  is at school, excited that tomorrow is Halloween. He is planning on wearing a banana costume to school, a costume that cost $12.99 on Amazon. Thank god for easy kids with uncreative mothers. Oh, and Sophie is home because we have an appointment to see The Adult Neurologist. Now that she's eighteen, we must make that transition to Adult Neurology.

Yiddy hoo.

18 comments:

  1. We too are making the transition to adult neurology... not happy. not happy at all. Which is probably why I havent made that appointment yet. As always, I feel for you and for Sophie. I wish and want only peace for your heart and mind, that all the questions and angst and uncertainty would vaporize. But it's not the way of your world, so i choose happiness for you too. Wherever you may find it, in between the cracks of the rest. You'll see it in the eyes of your gorgeous children for sure. :) xoxox

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  2. wean slow, ya know. calvin is on high doses of two meds. damn. one is onfi. damnit all. you go girl. you are in my thoughts and so is sophie. i hope this shit works. fuck the clusterfuck.

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  3. Brightness. Light showing through. Yes.

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  4. Your "perfect word" reminded me of this, which I saw on fb this morning:
    "Best quote of the day: 'I have no time for unwanted fuckery.' "
    Hope that brings a laugh to your day! (I don't know the person who coined the phrase, but the person who posted it is a fb friend.)

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  5. Fingers crossed. Prayers sent. Always prayers sent to you.

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  6. The place to be happy is here. The time to be happy is now. Repeat, etc.

    And it does sound like things are looking up. xoxox

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  7. I think you are doing remarkably well, considering everything hanging in the balance here. And did you know, you get thousands of good parenting points for letting the kid take a mental health day which we all know will mean you need one yourself. I am encouraged by what I read here, but I do wish the weaning road was not so arduous.

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  8. Elizabeth, I read always but rarely post. I am praying that the cannabis works wonders for Sophie. I have been thinking of you and she and lifting you up. I will continue to read with hope and faith in my heart. Supporting you both from Kansas-

    Carrie T

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  9. Maybe degrees, not miracles (yet)...

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  10. Regular font. Feet on the earth. One foot in front of the other. But: Sophie is brighter!

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  11. I've been hoping for you, and so glad you are seeing a positive change. Brighter is good.
    There's a new Ted video, about stress not being the killer, but believing stress is a killer is what kills you. True fact. People who embrace stress as normal biological response and think happy thoughts live longer. So I think choosing to be happy is a good goal. Easier said than done, but still....
    Hoping for more good things for you and yours.

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  12. your estimate of Sophie's brightness is as objective as a thermometer's temperature measuring a fever…. looks like there are some hills to climb but "brighter" sounds so good….. to fewer hills and more brightness…..

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  13. Oh I hope it works! Thinking such good thoughts your way. Took us a whole year to wean off benzo clorazepate, when we started keto. But slow & steady gets it done. I marvel that a doctor is allowed to get my 3 y.o. hooked on something it will take a YEAR to get off without ever mentioning that.
    Anne

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  14. Clusterfuck really IS a perfect word, isn't it?

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  15. I love the word "clusterfuck." Sometimes, no other will do. I hope that Oliver's mental health day really did help his without severely challenging yours! And I salute the bravery implicit in the regular font.

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  16. This might just fit in with my last blog post a bit, given the "foreboding joy" piece. I sincerely hope that Sophie is feeling positive effects from the CBD and I hope Oliver's mental health day did him well. I think that the larger we let things like the Realm of Caring get, the less chance that big pharma will get ahold of it. If it is a grassroots, people-driven swelling, then we won't let it go to their clusterfucking because we will have built it. That's my story and I'm sticking to it! Love. (Ha! The word verification was some set of numbers and the word "Weeds." I shit you not.

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  17. something weird - is I've been blowing my hair dry too - yikes what is happening to me is what I thought

    I hope you can get Charlotte's Web

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