Thursday, July 23, 2015


That's a weird shot, isn't it? I was trying to get a picture of us together when Sophie suddenly head-butt me really hard. It brought tears to my eyes, but it didn't seem to bother her. I suppose she has a high pain threshold what with all the goings on in her brain. My entire scalp is always so sensitive which, Dr. Jin tells me, is too much heat, and now I have a sore spot. Other than that, though, Sophie's had a decent day with no seizures to speak of, fewer tremors and jerks that I believe are withdrawal symptoms. Sometimes I put my hand on her right arm and gently squeeze it, and I swear I can feel an electric pulse running down her arm and into her hand. I wonder if she feels agitated by that, if it drives her crazy, if butting someone's head is a pain that distracts from a greater one.


  1. Maybe she just wanted to be inside of your head for a second. To mind-merge.
    Who knows?
    You both are beautiful.

  2. Ouch! I like Ms Moon's assessment of the situation. A mind-meld indeed.

  3. Tremors really bother me....perhaps to the point of making me temporarily insane. They hurt if it goes on for hours....I throw my stuffed animals off my bed if I can....I shove my face into my pillow and cry, Mommy rubs my legs if I am going crazy and it helps. If I could not ask my Mom to do it I might head butt her.....if I could but I can't , can't hold myself up enough to head butt...but I can ask for help ,so I do that. Sometimes when I can't talk very well and my Dad has more trouble understanding me than Mommy I want our brains to mind-link but it does not usually work. That is my experience.

  4. Yes, there's so much wondering and guessing about their thoughts, feelings, preferences, desires, sensations. Even the doctors are stumped much of the time (or should I say: even we parents are stumped much of the time.)

    Our daughters are true mystery women.

  5. I don't know if this will come out as I see it.
    Sometimes I imagine the uncontrolled seizures that last 20 minutes or more are like a nasty chest cold infection that is all balled up into a lot of junky mucous.
    When I see the cannabis do its think and the jolts and jerks are going on I imagine the chest infection is breaking up and there is no longer one big "loogie". There is a relief as the lumps of junk are now clearing up in a sort.

  6. I'm just glad Sophie had a good day. One day while going through what I'm sure was withdrawal, Michael told me that his "brain feels like it's going to explode". Maybe Sophie was trying to explain something like that. Or not. Sorry about your sore head.

  7. Elizabeth,
    After catching 4 seizures during an extended EEG monitoring at the hospital yesterday and today, the doctor
    is recommending Evie take Onfi. I know you are weening Sophie from this drug and I am thinking I will say
    no until I can do more research. She is already taking Lamictal XR and Vimpat. How likely is the Onfi to work?
    Not very. Her doctor is conducting a study of CBD oil, but Evie may not get in to the study. Do you have any thoughts or advice for me?

    1. Hi, Ilga. I am so sorry to have missed this comment from last week. I don't know what to say about adding a third medication to your daughter's regime. I prefer keeping meds to only two and would probably ask to wean one -- even as you're adding the third. Onfi, though, will probably help your daughter -- at least at first. It's a powerful benzodiazepine and generally DOES work until you get tolerant. Then you're stuck weaning it, and as you know that's a difficult process. As far as the cannabis trials -- I know they're conducting them, but I feel strongly that whole plant medicine is the best way to go. I don't think you need to wait for a study to open to try the cannabis oil. It'd be great to try it, too, BEFORE you go on Onfi as Onfi interacts with cannabis and the effects of the oil are muddy with so many drugs on board. Please email me if you have more questions.



Related Posts Plugin for WordPress, Blogger...