Monday, May 27, 2019

Pick Your Poison

This might be a record for my not blogging -- more than a week since I've bloviated about the various goings-on in my life and not for lack of them. Perhaps I don't feel like talking anymore about how Sophie has been struggling, how the CBD and the benzo and the sleep aid don't seem to be doing the trick, how I don't know really know what the trick is, anyway, but what I do know is that how many seizures is a relative thing, the counting of them, that is. A relative thing. Not something related to something else but rather relative in comparison. I scroll through my social media and between the kids dying (yes, dying) and the regular shit that is Terrible America, Sophie's three to five seizures (big ones) a day (yes, everyday) don't seem too bad. They're everyday or every day. If someone (Sophie) has anywhere from three to five seizures (big ones) a day, is anything working at all? Anyway? I have a friend who keeps meticulous counts of her son's seizures and is able to track, exactly, what affects them. He had seven in February, she might note, and after we increased his CBDa, only three in March. She agonizes over three, I think three! (Imagine three!) And I continue to draw up the syringes of benzo, syringes of CBD oil and CBDa oil (plunged into her mouth) capsules of sleep aid that I toss in there (her mouth) and the cup, quick, to her lips.


So. The Nice Neurologist suggested we try either Depakote or Lamictal. They're very good drugs, he said. Has she been on them? He asked. I said, Oh, yes. She's been on both. The Depakote in 1995, when she was six months old, diagnosed for three months, drug number three. And it didn't work, so we took it right off and tried the infantile ketogenic diet next (plucked smack dab out of People Magazine, check it out), and then phenobarbitol and then vigabatrin, and should I go on? The Nice Neurologist said, Oh, and Lamictal? I said, Yes. Lamictal for about seven years. And it never worked.

Reader, I know you wonder why? and your why is why would you give a drug to your daughter for seven years if it didn't work? And I honestly don't have a sensible reason to give you, other than The Neurologist At The Time not having any other options and perhaps Laziness and perhaps because of The Difficulty of Weaning or perhaps The Odd Chance (A Neurologist would have suggested this one) that the drug (Lamictal) was keeping her to only two hundred seizures a day instead of five hundred seizures because -- it's coming -- it's relative.

Let's make a long story short. Let's make a deal. I picked Depakote. The reasoning: it's been nearly 25 years (!). We gave it to Sophie last Wednesday night and again on Thursday morning, Thursday night and Friday morning. She slept all day on Thursday, woke briefly for breakfast on Friday morning and slept all day Friday. She could not be roused for the entire day on Friday and had an alarming amount of congestion above her chest and below her mouth (in her throat) which was probably increased secretions. She could not be roused. The Nice Neurologist relayed through his nurse that we should stop the Depakote and talk tomorrow (Saturday), so while I generally worry about Sophie dying at least once a day, I worried all day, every moment, actually, even though relatively speaking, I am not scared of death.

Sophie had no seizures during this period, but, to be fair, she was practically comatose. Being seizure-free, I have found, involves a trade-off, and this is where the relative part comes in.

I and the Nice Neurologist had several short (not sweet) conversations over the next two days regarding what to do. What to do about Sophie? I think she'll need a smaller dose, he suggested, and I pointed out that the pills he'd prescribed have no score so they can't be cut in half. The liquid form! he said, and I'll call it in! I was walking down the street with Sophie in her wheelchair. She woke from her comatose state on Sunday, bright-eyed but batty, agitated, the drug clearing her system. I imagined a brain cleared of chaos and cobwebs but unsure how to proceed without either. I'm excited! The Nice Neurologist said. I said, Excited? and he said, It doesn't take much to excite me! and I thought, excitement is relative.

I picked a poison. Now let's see what happens.


  1. I wish he'd read her file.
    Wishing you better days. Wishing Sophie safety.

  2. Elizabeth- The same thing has been going on with Eva. Different drug....same thing. She was having a large increase in complex partials. “Normal” = 7-10/day and started having 15-20+ . She also started having T/C seizures again during the past 2 weeks. She’s been on almost every drug through the past 8 years - except - Vigabatrin. Started it 2 weeks ago. After the 2nd titration (1000mg morning/night) she CANNOT stay awake. Almost comatose is an accurate description. She couldn’t be roused F/S/S/M! I emailed her doctor last night & will follow up today. I’m always concerned but I’m really worried. My mind keeps going to -
    We need to admit her - take her off ALL (5!) medications & start over. Crazy thought - I know. But I’m at a loss and THIS is not right. Something is really wrong.
    My heart goes out to you & Sophie. I hear you. I feel you. - MIchelle

  3. I don't even know what to say except that with all of my heart I wish this wasn't part of anyone's reality.

  4. Your post took me back to our Days of Depakote, the demon drug that caused my daughter to have more frequent and more intense seizures. And to Lamictal, the drug we thought to be the ANSWER but the peace lasted about a week, and then seizures returned but to a lesser degree. So, yes, it was the best we could do. The problem is the moving target. You might think you've found home but the earth keeps shifting, and what you thought was solid ground only an illusion. In the meantime, I am inspired by your writing and your devotion to your daughter. I hope to meet you one day. We have several friends in common.

  5. I am grateful for the update. Gratitude in this case is relative too. I wish I could send more than love and saying I hear you.

  6. No good words. But I'm here. Sending you love.

  7. I don't know what to say. Sending you love dear Elizabeth💜💜💜

  8. I've just started reading about sex differences in drug uptake and gender-based/biased research, how most, almost all, drugs are tested on male probands who have not only different hormone metabolims but also different muscle mass and water metabolism. It's scary and enlightening.
    We are only at the beginning.
    My thoughts are with you and the magical Sophie.

  9. Oh, Lord. Relative is a fundamental concept in parenting our kids! Relative seizures, relative disability, relative coping, relatively good day/bad day, relative hope, relative despair. Nick has about 3 seizures a day too - all (lately) while he's asleep. He has awake nursing by his bedside to restart his breathing if he has a central apnea episode or to reposition his head if he obstructs. They reposition him for pain after seizures. And the nurses judge relativity differently from me and also from my husband - of course also from Nick himself. EVERYTHING is relative. Thank you for this, Elizabeth.

  10. Yes, it's all relative. The picking of the Poison for certain illnesses is the most agonizing decision... especially when it's for someone else. With SMI it happened a lot too... sort of an Rx Experimentation of sorts of what MIGHT work... or cause the LEAST harm... and any harm done seemed to me to be on my hands, since as the Caregiver I had to make the decision on behalf of those who could not. In my situation at least there was the crossroads where the Adult Child with SMI could legally choose their own Poison... or NOT. I cannot pretend that wasn't a relief to me that they would have some choice now... all chose to discontinue all Meds. Was it better? No... but at least they were then only dealing with their illness and not their illness plus the horrible side effects of the drugs and feeling like some Guinea Pig at the hands of Medical Professionals anymore. It's all horrible... so it comes down to what is LESS horrible?!

  11. I am glad to see Henry's face through the fingers. When chaos and crisis are in the mix, so thankful to have the support of our children who know the drill even though there is more laundry and a steeper grocery bill. Lots of love to you. Hope to catch up soon.

  12. I struggle with the same thing, in a way. The Lamictal. I so want to ween myself off of it, but the side effects keep me using. Not to mention, I would probably be sitting in the corner without it. The same for my daughter, who has now developed a tremor in her left hand. A result of 19 years of use? I get your situation. You're doing your very best, and it's the best you can do, and it never seems enough. Thinking of you.

  13. What a wonderful writer you are, thank you for giving me a glimpse into your world.

  14. It never ends, does it?

    More than a year ago we were at Katie's psychiatrist's office and we were trying to find something that would stop Katie from beating both herself and everyone else up. The psychiatrist looked at me and asked if anything we had tried in the past had worked. Um, we wouldn't be here if it had. WTF!

    So now Katie is on a cocktail but it works for her and for her the Depakote has given her back her life. Her anxiety is gone and she's calm. Comatose is not calm. I hope the smaller dose works for Sophie. She's a pretty tiny young woman.

    But really, doctors don't seem to have any clue when it comes to how the brain works. I'm the one who did the research and picked out my own anti-depressant which works, for the most part:)

    Sending strength and hugs and love to both you and Sophie.

  15. Oh, Lord. Here's hoping it does some good. I have a good friend who took Depakote regularly -- STILL takes it, as far as I know. I guess with many, many drugs the question is one of good vs. side effects, and good vs. untreated (the "relative" benefit, as you said) and it's hard to weigh all those variables, especially over a long period of time as conditions change. Not like I'm any kind of expert. Keep us posted!

  16. I love you. I wish this wasn't happening. Sending light.

  17. Sending love to your whole family.


  18. This constant experimentation by doctors who don't seem to know any more than they did when Sophie was a baby seems...inhumane...Did this person bother to read her records? Poor Sophie. Sending love to Sophie and you.

  19. So much of what you've been through matches our ordeals with C. She too seizes daily: around five big whoppers and many little twitches - and even more on her bad days. That's despite Keppra, Vimpat and a high dose of CBD. She too was rendered nearly comatose by a cocktail of drugs the hospital doctors gave her to zap her status epilepticus. One sane, senior doctor finally appeared and removed several drugs returning her to wakefulness.

    And she too did Depakote for two years until her liver was damaged by it. The lovely neurologist treating her at the time had ignored the warning signs of her blood test results throughout that period. So by the time we stopped it, severe damage had resulted.

    (Her pediatrician kept telling us: "These results don't look good. Tell the neurologist.")

    Even when the damage was apparent and severe, that neurologist insisted the culprit was the cannabis, not the Depakote. The prognosis was dire but thank heavens after we removed the Depakote and all the surplus fluid in her body, her liver healed.

    Bottom line: Keep checking Sophie's liver function readings while giving Depakote and I really hope her seizures abate!

  20. You were on my mind this morning. I have no words - you said them all, really. I know you really can't send love, virtually - it's such a dumb thing we say now. But - you WERE on my mind. You are. And Sophie. And the struggle, as much as I can, here, across the world in miles and life experiences, my heart feels that struggle and my mind walks these roads - at least some of them. Enough of them, I think, to say, I am, in this moment, with you, and sending love, and my heart, heavy with the love you carry for your child. Bless you, all. Forgive the inadequacy of these words.



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