Wednesday, May 22, 2013

Headlines you don't want to miss (an extremely black humored post)

Vintage portrait of an Amazigh woman, immaculately dressed and adorned.

the following is dedicated to my fellow Parents from the Land of Epilepsy 
or other Disorders 
and all those who love me and whom I love

So, I'm wondering what to do about the following headlines that came through my email box this afternoon:

Leading Causes for Epilepsy in African Children & Adults

Preventing SUDEP

Next Week Do Not Miss:

  • Valproic acid lowers IQ in kids to age 6
  • Valproic acid is linked to decrease in brain volume

Just so you know, I haven't clicked on the top headline although I have an idea that it's about a strange bacteria or even a  kind of tapeworm. I  know this because about eight years ago, I spent a whole night and several hours of the morning -- the darkest hours before dawn -- Googling seizures, weight loss, fleas, dogs and tapeworms and discovered that there's a tapeworm that makes its way to the brain and causes seizures. Even though this generally happens in Latin America and Africa, I thought at the time that I had discovered something new, that Sophie had been bitten by or swallowed a flea from our new dog at the time, and that said flea had laid eggs, a tapeworm had grown and made its way to her brain and was causing severe weight loss and even more seizures than she had before. I was so convinced of this that when the sun rose, I called our pediatrician and insisted that we do a fecal test to which he happily complied (bless his doctor heart). When it came back negative, I think I only sighed and thought onward.*

The second headline is about SUDEP, or Sudden Unexplained Death in Epilepsy Patients, a sort of SIDS for the epileptic set. It's something to be terrified about and something that has finally, after eons, taken hold in this country as a topic to research and talk about. I've even heard it described as a hot topic in the same tone that some in the epilepsy community use when they lament the fact that autism gets far more publicity and dollars than epilepsy despite the fact that it affects far fewer people. I did not click on the SUDEP title, either, because I'm certain I already do all the things one can possibly do to prevent it outside of being born again and claiming Jesus as my savior. If someone has direct proof (through a double-blind study) that doing so prevents SUDEP, let me know because I'd be all over it.**

The third headline is so enticing, no? A sort of teaser, something tantalizing, held out of reach and done so in order to make the drudgery of our days pass more quickly. Valproic acid or Depakote, is an old-line drug for seizure disorders, and Sophie took it back in the dark ages -- the 1990s! -- when she was not even six months old. She took two forms of it for a few months and despite warnings of stomach ulcers, I am not sure we were aware of its effects on IQ nor the volume of her infant brain. Evidently there have been advancements. Good to know. But we have to wait until NEXT WEEK to read about it.***

So, that's it for today. Next time you read the paper or the headlines and grow insanely confused about what to eat and what not to eat, what will make you fat and what will make you thin or what will give you cancer and what won't, add the above facts to your getting addled brain. Then mull on them for the next few decades, feed a dog and plan a trip to the dark continent, drink a Diet Coke and eat a slice of pizza with extra cheese. Adorn yourself with African jewelry, knit a blanket of sorrows and smoke a shitload of cigarettes while lying on your back on the plain.

*For any of you seizure parents out there who might run to your computers and Google seizure inducing tapeworms, here's the link to the headline that I posted above. Don't tell me what the article says.

**To read more about SUDEP and perhaps check your list of how to prevent it, go here. Again, don't tell me what it says.

***Check back next week.


  1. I always thought valproic acid makes it harder to think.

    My parents had me checked for parasites and worms ...they found out my poop was sterile, the good bacteria got killed. No worms , no nothing.

  2. But have you tea? Oh wait! Maybe coconut oil! Yeah! That might be the answer.
    Loving you and your black humor.
    Ms. Moon

  3. For real. I'd add to green tea (tastes like a sock filled with lawn clippings, btw) and coconut oil all of the myriad 'cures' my grandma used to send my mom for my sister's deafness, and all of the many ways my mother could have caused her deafness in utero (despite my sister's initials being "E.A.R" which is kind of evil and my sister being neurologically deaf, she was the only pregnancy in which my mom didn't smoke (a cause of n deafness) or get sick with pneumonia.)

  4. I'll have a smoke with you, Elizabeth.

  5. Valproic Acid works for my gal. It's the only seizure med she's on...I mean, there's always breakthrough seizures. I saw what happened to her when her dose suddenly became sub-therapeutic a few months ago: she just seized non-stop. So, I guess it's one trade off for another. She wouldn't be able to think much if she were seizing constantly either. Just sayin'! ;)

  6. The things we do and don't do, read and don't read, all the while certain that the one thing we don't do or read will probably, in some ironic twist, contain the nugget of information or magic we need the most, that is a recipe for insanity. And while it doesn't mean that I wouldn't do something to help my child if I thought it was within my reach and there was enough evidence to support it, I am so often reminded that I am not in control and the minutes or hours spent eating good food, watching my children sleep or play, and reading good books (and blogs) are a powerful balm.

    Love to you.

  7. In certain instances it isn't that SUDEP is preventable but rather, treatable. I'll explain; Segev has entered into a reconcilable stage of SUDEP on many occassions in his fifteen plus years, specifically to be referred to as central apnea, not related to visible seizure activity.
    One of the times that I discussed this with his cardiologist he responded, with a quiet non-chalance, 'yes, but you vigorously shook his chest and all was well, right?'

    And so it was, although the first few times, since he had already become blue from head to foot, I gave him full CPR. Since those early years I learned that Segev can never be out of sight for more than thirty seconds during the day and monitored electronically during the night hours (where strangely only once did he stop breathing).



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