Thursday, July 7, 2011

We're a weird bunch.

Humor is tragedy plus time.

Mark Twain

My friend Erika and I were talking on the phone last night, and I was sharing with her my recent visit to The Neurologist. Erika has a child with a seizure disorder as well, and even though her daughter is many years younger than my Sophie, Erika's sense of humor is sharp, achingly so, and she jumps right into the Roman gladiator pit with me.

As you might have surmised, Sophie's honeymoon from daily seizures is now officially over. The drug Vimpat has ceased working as well as it was, and now we're on the tiresome wheel of deciding what to do next. We don't really have any options that jump out at one, unless you think another ketogenic diet trial is worth it.  The second and last time we tried the keto diet was about a decade ago (the first time was in the early days -- the mid-90s, when not many people even knew about it), and while it helped Sophie a bit as far as seizure control, it also turned her into a caged tiger, ravenously, desperately hungry with impacted poop (I'm not mincing words). It traumatized me so deeply that I look on that time as being equal to the trauma of her diagnosis and the early days of high dose steroids. That the connection between mothers, children and food is a deeply primitive one is not lost on me, but acknowledging it does nothing to dull the pain of that time.

A second choice is a revisiting of the drug Vigabatrin (or Sabril, as it's also known)-- one of the "newer" approved drugs and one that we tried, also, back in the mid-90s when we ordered it from England. I've waxed philosophical about Vigabatrin in a chapter in my yet-unfinished book -- the chapter was then published on's website.  The drug wasn't approved for many years in this country because of some very serious side effects involving the retinas of the eyes. It's now approved and used as a front line drug to control infantile spasms, the terrible epileptic syndrome that Sophie was diagnosed with -- a form of epilepsy that continues to stymie the best minds. In fact, very little progress has been made for babies and children with infantile spasms in the sixteen years that we've been part of that club. In order to go on the drug now, one is subjected to a strict protocol -- eye exam baselines and the signing and initialing of pages of caveats and warnings and information. This is what I did at The Neurologist appointment yesterday, and as I told Erika, I found it bizarre and not a little hilarious that I was able to casually check the little box and print my initials, EA, next  to sentences like: I understand that about 1 in 3 infants taking Sabril will have damage to their vision. I understand that if any vision loss occurs, it will not improve even if my infant stops taking Sabril. 

I loved Erika when she burst out laughing when I told her about initialing this sentence: I understand that there is no way to tell if my infant will develop vision loss.

Unless you get it, you're probably not laughing, but we were and I think if we were two women in vaudeville we might have been slapping our knees in hilarity, knocking each other over with the force of the absurdity.

What really set us to being utterly cracked was my description of our other "option" for control of seizures: the vagal nerve stimulator or VNS. You can google and read about it online, if you'd like to know more. It's been around for quite some time and really doesn't have a fabulous efficacy rate -- the rule of thirds, much like drugs (one third improve, one third stay the same, one third get worse or go off). In any case, here's a scan of the box that had the informational DVD and brochure. 

In describing the packaging, I wondered aloud to Erika about the work that went into that marketing and how hard a group worked on  just the right words, the right picture, how much to suggest, how to harness hope and propel people toward treatment. I wondered aloud to Erika whether the two women frolicking on the beach might be our daughters one day or maybe even the two of us, looking beyond. 

We just laughed and laughed and laughed.

Sanity and happiness are an impossible combination.

Mark Twain


  1. Elizabeth, I applaud your sense of humor in the face of such horror. Humor is a tool to enable us to navigate the most dangerous of waters.

    Here's a little story for you regarding gallows humor:

    When Mark, my first husband died, we put the box containing his ashes in the bedroom we'd shared together for many years. (I'd moved up to the attic bedroom we'd been in the process of building when he died.) Then I also put in that bedroom the few things small items I received of my mother's when she died, and as I couldn't yet deal with all of Mark's clothes, shoes, etc., they too inhabited that room. My boys and I took to referring to it as The Death Room. For example, when cleaning up, one or the other would ask me where to put something, and I'd casually reply, "oh, put it in The Death Room."

    I entertained often, and when asked by guests where should they put their coats, I'd say, (without considering how weird it sounded) "Let me put it in The Death Room." Believe me, that comment was always met with shocked expressions.

    The Death Room subsequently was emptied and painted, Mark's ashes scattered in the creek at his parent's house and it's been reincarnated into my son's bedroom. But when the three of us are together these days, the subject of The Death Room inevitably comes up, and we dissolve in hysterical laughter.

    Bless you, dear woman.

    It's often a stomach-wrenching spin on an out-of-control roller coaster, and the more humor we can dig up the better off we are for having been blessed with this gift of life.

  2. I have to admit that, the moment I saw the photo, I knew it was packaging for some seizure product...and my first thought was "oh yeah...sure..." and a head shake. "Happily Ever After" packaging is really, really funny.

  3. Never underestimate the power of humor! Glad you are able to find some along this path, which will hopefully lead to some answers for all of you ....

  4. I once got paid to participate in a market research group for a CF drug. The drug company had a double whammy marketing strategy - scare the sh*& out of the parents and then present their drug nestled amongst "happily ever after" photos. (And of course, the medicine was , and is, $5,000 a month.) I can't even tell you how cathartic it felt to tell them EXACTLY what I thought about their marketing strategy. I would have laughed, but it's just not the same when you are the only one laughing ...

  5. Oh, that "what to do next" wheel. I think of it as the one in the hamster cage where they go to furiously burn energy in order to exhaust themselves before sleeping. It is a necessary evil and yet, so hard to get back on the damn thing.

    I wish you and Sophie (and your friend's family) much luck in finding workable solutions. Nobody told me that being a mother would involve so much decision-making with so little conviction. Not sure what I would have done had they told me, but it is sometimes startling.

    Love and light. (BTW, the word verification for my comment is "uniting." No accidents)

  6. This reminds me of what people have said to me about signing the consent forms for their child's cancer treatments. The caveats, the risks, the side effects are horrible. The odd part is that I don't recall worrying about that at all, at the time. Given the fact that we were told that Katie could die at any moment, and that they couldn't figure out for sure what kind of tumor she had, getting a protocol of any kind was a relief. The side effects were sort of on a whole other level of concern, and it wasn't immediate. Later on, I wondered about her fertility, potential hearing loss, heart damage, etc., but initially, it was just, "Please give me something we can use to try to kill this f*cker (my name for the tumor)!"
    That's just a long-winded way of saying that you have my heart's true empathy, and love. I pray for a cure, or at the very least, for relief, for Sophie, for you and for all families who live with this disorder.

  7. Your fortitude and sense of humor make a powerful cocktail.
    The photo on the box is so weird. How about that line in the sand?

  8. Every time a commercial comes on TV about medication for depression I am wondering what the developer of the commercial was thinking. They give all the hope of help and at the end they talk of the complications of thinking suicide or depression. Wait...wasn't that what the medication was suppose to help?

    Brave Elizabeth and your dear hubby...what trials you have faced and continue to face. If I ever needed a hero you would be the one.

    Keep up the humor...tears and all.

  9. I shut off the VNS after one year since one of the four kinds of seizures Segev suffers from was just getting worse, despite also taking three medications (at the time also Sabril).
    Then came the ketogenic diet which has made a huge difference for Segev until his last hospitalization Jan.- Feb.
    But the success of the diet concerns not only the control of seizures but also (in Segev's case) much needed weight gain. He gained 15% body weight in two months and after a year leveled off at a 60% weight increase after one year. There was never any constipation.
    The diet (and calculation) was put together by me with readily available products necessitated in part by Segev being lactose intolerant.
    Write me if you want to get the recipe for reference.

  10. I don't know if it would make a dent for Sophie, but a kid I know recently started on the Atkins diet (they can't bear to do the keto again) and it is helping considerably. Might be a benign experiment to try for a week or so. She has a VNS. Usual story.

    Regarding drug marketing, I was really struck by this Marcia Angell series of articles in the NY Review of Books.

    Old Samuel was such a quotable guy!

  11. Well,you know I am laughing.Really I humor,our humor has saved us,many,many times.As in when we read the same drug side effects when we obtained it "illegally" three years ago ... vision loss... we'll take it.And we were like well, will,she honestly be driving one day.Nope.We'll take the Sabril please.

  12. My character Truvy in Steel Magnolias said, "Laughter through tears is my favorite emotion."
    I can't say it any better.
    I love you and your sense of humor. It is what saves you.

  13. Mark Twain was a smart man:)

    I got nothing, sadly. Wish I did. Wish I could pull a cure out of my ass, truly.

  14. Oh, rats (and other expletives). And although I'm sure that checking those little boxes after all these years is exasperating to say the least, I love the humor you're able to find in doing so. Even though I've barely just stuck my foot in this pool, I get it. Sending big hugs.

  15. love the twain quotes - love your gallows humor. hate hate hate the situation that requires you to employ it.

  16. Royce has been on sabril for about 10 years, as well as tegretol and keppra. Nothing stops his daily seizures but it certainly takes the edge off them. After he had been on sabril for about 2 years - there was the big health concern about retina damage. He is completely blind so we didn't have to change from it - even though it bothered me that people were given a drug that hadn't been fully explored.

  17. Speaking of laughter and consent forms (though not of tough decisions): my 5 yr old son's kindergarten class attended a "Dairy Tour" (we're in the mid-west). The release for 5 yr olds to throw bean bags and draw pictures of cows: [the Tour] is a test of a person's physical and mental limits and carries with it the potential for death [&] serious injury...

    I kept the form because... well, obviously. (though I made my husband sign it).

  18. only you can leave me laughing with you and crying for you at the same time.



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