VNS: Very Nerve-Wracking Shit or Virtually No Science*

Blind belief in authority is the greatest enemy of truth.

Albert Einstein

Back in the dark days of the last century -- let's say, 1999.

Sophie attended a wonderful preschool over at UCLA. There were two kids in her class who also suffered from refractory seizures. The two kids were just a couple of years older than Sophie, and their mamas were rocking brave and powerful. When they heard about a new medical implant device called the Vagal Nerve Stimulator, or VNS, they researched it and talked to their neurologists about it and ended up flying to Ohio, I recall, where the company that had created the device, Cyberonics, was implanting it. I remember that not many children had gotten the device yet, but it looked promising, and we in the Refractory Epilepsy World were  quite used to having treatments thrown at us that were, if not experimental, than approved for use in adults or whose mechanism of action is unknown. I'm only telling you this part because I want you to know how long I've known about the VNS -- since its earliest use, even -- and how this whole thing that we call the treatment of refractory epilepsy works.

We are strong and brave and desperate people.

I learned over the years that while the VNS could be helpful, the efficacy rate wasn't that great (the usual 33% noting "improvement" statistic) and, combined with the possible side effects, I never felt any compelling reason to try it on Sophie. I think I was quite sick of the whole shebang by the time it came around, but not quite at the point where I vowed to never try a new drug unless Jesus Christ offered it to me.  I never had a good feeling about the device, never really spoke to anyone who had gotten it (and I knew A LOT of people who got it) and was glad to have done so. I was probably also overwhelmed and lazy about it, too. I heard some horror stories, but there are horror stories for literally every single epilepsy treatment, including the ketogenic diet (which was a horror story for us, too).

Oh, wait.

There is one epilepsy treatment that I've never heard a horror story about, and that's cannabis, but that's another post.

Not a single neurology appointment passed without mention of the VNS. I'm dead serious. I laughed off or declined the VNS suggestion every single time it was trundled out by both beloved and barely tolerated neurologists over the twenty or so years that device had been around. Most recently, I learned that Sophie's old neurologist, whom I used to call The Neurologist before I fired her, has been paid by the company that manufactures the VNS which was an explanation, I guess, for why she suggested it in every single appointment we had with her. Honestly, if you go over to the right side bar and search for the VNS, it'll come up numerous times as part of my conversation with The Neurologist.

These folks are throwing darts.

Try this.

Try this.

Try this.

Where am I headed?

I was also going to tell you about my oft-irrational but actually hard-won and some would say earned distrust of the Medical Industry (emphasis on the word industry, so don't jump in here with your exclamations of all the good and wonderful caregivers in the medical world), particularly when it comes to the authority of the CDC, the almighty FDA and other Powers That Be. I had a bit of a tiff over on Facebook (like a fly to shit) about the flu vaccine. I object to the mainstream media pushing vaccination policy as a morality play. You know what I'm talking about, and I'm not going to belabor it here. Some woman with whom I was engaged in this ridiculous Facebook discussion finally had the last word with a patronizing Okey Dokey, and I let it go. Because, you know, Science is infallible and The Powers That Be are to be trusted, and if you don't you're anti-science and a crazy person.

Wait. Where was I headed? I'm off track.

So, this is where I was headed:

Are Implanted Medical Devices Creating 'A Danger Within Us'?

If you can't listen to the whole segment, read or at least skim the transcript because it's mind-blowing.

Especially the VNS and epilepsy part.











* or the Vagal Nerve Stimulator

The Yuletide Season Pleasure Sampler

There are many things making me feel like I'm running off the rails this December. There are also many things that are giving me pleasure. Here are some:

1. Those Janis Joplin stamps. The package looks like a single record, and on the other side is a great big photo of Janis. They have Jimi Hendrix ones, too.

2. I heard this song on the radio yesterday, and it made me happy. It makes me cry a little, too.




3. This list of NPR's Maureen Corrigan's favorite books of 2014 gave me that overly-stimulated feeling that I still get when I go into a library or a bookstore and realize how many books there are to read. It's the good kind of over-stimulation, not the frantic one laced with anxiety that I get when I realize how much money shitty movies make during the holidays.

Sometimes You Can't Pick Just 10: Maureen Corrigan's Favorite Books of 2014


4. Yes, my house looks like one of those obnoxious Christmas shops in a tourist town, but I have several tableaus (if you will) that give me pleasure. Here's one:

Here's a close-up of the bowl and the weird baby that creeps some out but gives me pleasure:

5. I listened rapturously to the last episode of Serial, the podcast from This American Life. It was really pretty fantastic and highly addictive. It also saved my sanity in the car the last few weeks.




Reader, what's making you happy or giving you pleasure or helping to save your sanity during the Yuletide Season?

Highway Thoughts on Help and Stress

This morning I drove west to my annual OB/GYN appointment and blew my news blackout to listen to Morning Edition on NPR. They did a segment on stress and the effects of stress, how most stress reported has to do with chronic health issues -- people reporting that they themselves are ill or someone in their family is ill or needs help because of disability. I don't feel like looking up the link, but I'm sure you can google it on the interwebs and listen yourself, if you're so inclined. I nodded my head at all of it, of course, but was most struck by a statement about Americans' unique hesitancy to ask for help. Our culture is, of course, one of rugged individualism and self-sufficiency which is courageous and optimistic at best and selfish, unrealistic and downright sociopathic at worst.

As I crept westward on the 10, I mulled over this and was reminded of the video I made with Erika and Phil several years ago about extreme parenting. New readers here might not have seen this video, but in a nutshell, I asked people who care for children with disabilities or those who have lost children to disease to take a photo of themselves with a poster stating what they wish they could say to their younger selves on the day of their child's diagnosis. While I wish there had been more diversity represented in the finished video (I used what I got!), the responses were rich and varied. By far, though, the most common advice parents had for their younger selves was "Ask for help," and "Accept help." I think there's a little of that cultural thing going on here, for sure, and I also think there's some control stuff -- when your world is turned upside down, and you realize that we actually have very little control over our children's lives, you tend to control what you can, and at least for me, I might have thought (unconsciously) that what I could control, I'd do myself. Initially, doing it myself made me feel empowered, in control, in charge and confident. After a while, though, at least for me, I was exhausted, burnt out and incredulous that this caregiving was going to be forever. I won't even talk about what the effects on friendships, on relationships with family and even marriage have been because -- well -- that's no blog post. Despite the insanity, I rarely did ask for help or even accept it when offered. I'm being utterly honest here when I say that this might be one of my only few real regrets of my early years with Sophie (pushing more forcefully for full inclusion in school being the other one).

Just some thoughts as I ambled down the highway toward the paper gown that ties in the front and the speculum.

That being said, I thought I'd post the video here again so that you can watch it and perhaps share it, particularly with those who might be just now entering this strange, lonely, often hellish and overall wondrous world of extreme parenting.

Gone Missing

Even though it's from the satiric newspaper The Onion, this story resonated and made me laugh out loud:

ROANOKE, VA—According to reports from stunned Melberg family sources, Mom just walked up the stairs, slammed the door to her bedroom, and locked it.

The shocking incident occurred shortly before dinner time in the Melberg home at 46 Fairmoor St. Although Mom had reportedly been silently chopping vegetables in the kitchen, showing no signs of outward agitation or anger, multiple sources confirmed seeing her walk briskly through the living room and up the stairs before locking herself in her bedroom at approximately 6:38 p.m.

Read the rest HERE. 

It reminded me of some notes I'd scratched in my little purse notebook the other day when I was listening to NPR in the carpool line at The Brothers' school. I was listening to a story related to the saving of the three women who had been kidnapped and held hostage for nearly a decade in Ohio. The woman on the program was some kind of official at a national organization that compiles data on missing persons, and she had a thick, lovely southern accent. She sounded matter-of-fact and kind at the same time even though she was basically detailing statistics about how many people "go missing" each year, how many are found and how many of these are children, runaways, etc. As you might suspect, while there are hundreds of thousands of people reported missing each year, most are resolved and only a tiny percentage are open cases. At some point in the woman's discussion, she said (in her thick southern accent) -- and I'll paraphrase here -- that some folks just go missin' on their own accord. They up and leave their families and disappear. They might start a new life in some other place, change their name, you name it. It's your right to go missin' and some do just that. 

Reader, despite the gravity of the Ohio story and the prospect of losing one's child, I practically burst out laughing when she spoke. I thought, as I sat in the carpool line I want to just go missing. Now, before you act all concerned and leave earnest comments, I'm not threatening to go missing. I'm just saying. 

While I'm away,

Vincent Van Gogh, Starry Night, 

please listen to this -- all of it.



or Click HERE.

There's something for everyone -- the creative, the intelligent, the abled and the disabled. It's really something.

Listen to it.

This is My Child

"I've had doctors, a couple of doctors, who have questioned a decision about doing something for Olivia, kind of on the basis of: Is she worth it? I've looked them in the eye and said, 'Don't you dare say that to me. Do you have children? What would you do for your child?' I think society can look at a person like Olivia and say, 'What can she contribute?'"

--Tamara Welter, mother to Olivia, aged 21

What does it mean to be human? 


What does it mean to be alive?


What does it mean to be productive or not?


Does it matter?


Above all, this is my child.

Read more and listen to this story -- it brings up just about everything that we parents of children with severe special healthcare needs face.