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Thursday, November 29, 2012

The Axelrod Family and more about AEDs

After my post yesterday, (basically vilifying anticonvulsant drugs), i ran across this article about David Axelrod and his family (posted in it's entirety below). I'd known about the Axelrods and their daughter, but i hadn't picked up on the part about their finding a medication after 18 years of trial and error (and thousands of seizures). Dudes, i've only been at it a little more than ten.

So there's always hope i guess, as exasperating as the search can be. I haven't even tried every drug out there yet. 

I suppose i should've qualified my recent me-odio-pharmaceuticals post with the fact that i'd just learned from my primary care doc that my BUN and creatinine levels are elevated to the point of concern (now that i've been in somewhat of a groove on Vimpat and lamotrigine). Sooo, in lieu of hitting up my sister for one of her kidneys, i'll prolly be switching medications soon. 

Gah, it's all i can do not to be a nervous wreck about it though. To the point where kidney failure almost sounds preferable. (I know it isn't, but my fear is legitimately irrational, if that makes sense.) So, i'll make the trek to the epilepsy specialist and we'll probably give Depakote a go (so i can equitably dole out insult to other organ systems- sorry, liver!) Fortunately, i'm neither fit for, nor planning on starting my own family, so the teratogenic nature of Depakote is not of concern to me.

For shits and giggles here's a list of the described side-effects of Depakote (found here):
The most common side effect reported in patients taking Depakote is shakiness, or tremors, (ha!) with 57 percent of patients reporting this side effect. Nausea was also reported in almost half of the patients taking Depakote in the clinical trials. Vomiting was reported in a smaller percentage of people, up to 27 percent. Headaches and drowsiness were reported in about 30 percent of people taking Depakote in the drug studies, while weakness and dizziness were reported in about 25 of patients taking Depakote.
Other side effects that were considered "common" in the Depakote clinical double-blind trials occurred in anywhere from 5 percent to 25 percent of patients taking Depakote. These side effects included:
    • Loss of hair
    • Stomach or abdominal pain
    • Weight gain
    • Weight loss
    • Constipation
    • Diarrhea
    • Fever and other flu-like symptoms
    • Insomnia
    • Heartburn
    • Tinnitus, or ringing in the ears
    • Mood swings and/or nervousness
    • Higher susceptibility to certain types of infections
    • Blurred or double vision
    • Back pain
    • Problems with muscle coordination
    • Swelling in the extremities
    • Memory loss
    • Change in appetite (increase or decrease)
    • Involuntary eye movements
 Rare and Serious Side Effects
There are some serious side effects of Depakote that are rare, but require medical attention if they occur. These serious side effects include:
    • Depression
    • Having thoughts of suicide
    • Liver damage
    • Pancreatitis
    • Seizures
    • A decrease in body temperature, or hypothermia
    • Severe bruising
    • Bruising easily
    • Unexplained bleeding
    • Allergic reaction

So without further complaining, here's the article:
The Boston Globe

By Bella English

Axelrods focus on strategizing against epilepsy

David and Susan Axelrod and their daughter, Lauren, who was afflicted with epilepsy from infancy into adolescence before a medication was found to treat the seizures.
David and Susan Axelrod and their daughter, Lauren, who was afflicted with epilepsy from infancy into adolescence before a medication was found to treat the seizures.

David Axelrod, President Obama’s chief political strategist, and his wife, Susan, will be in Boston on Wednesday to cochair a fund-raiser for CURE, Citizens United for Research in Epilepsy. Susan cofounded the nonprofit in 1998, because their daughter, Lauren, was left developmentally disabled by epileptic seizures. The event is cochaired by Anne Finucane, global strategy and marketing officer at Bank of America, and her husband, Mike Barnicle; their daughter has epilepsy.

Q. Tell me about Lauren’s journey with epilepsy.

Susan: Lauren is 31 now. When she was 7 months old, she had her first seizure, of thousands. I had no idea what epilepsy was, how a totally healthy baby can be put to bed one night, and then have her life permanently changed. We went through more than 20 different drugs, brain surgery, brain stimulation, special diets, none of them successful. One of the miracles was that at age 18, she responded to a new medication and has been seizure-free since.

David: It’s important to note that she functions like an early adolescent. But we’re lucky. Many of the friends we’ve met have lost their children; 50,000 people a year die from epilepsy.

Q. How was CURE started?

David: Susan and two other moms started this at the kitchen table. And now it funds research all over the world.

Q. David went on “Morning Joe” on MSNBC and promised to shave off his 40-year-old mustache live on TV if you can raise $1 million for CURE by the end of November. Really?

David: It followed from a bet I made with Joe [Scarborough] before the election [that Axelrod would cut his mustache on TV if Obama lost Michigan, Minnesota, or Pennsylvania]. I won it, and it called for Joe to grow a mustache. In exchange for letting him out of his obligation, we launched this Slash the ’Stache campaign to raise $1 milllion, with the first $10,000 donated by him.

Q. How much have you raised?

David: About $600,000 so far.

Q. Susan, you have never seen your husband without a mustache. What if you don’t like the way it looks?

Susan: He can always grow it back.

David: This is a risky proposition, but the cause is worth it.

Q. What does CURE do?

Susan: What distinguishes us is that we are exclusively about research. We are headquartered in Chicago but we fund research in nine countries.

David: Part of the problem is that the epilepsy research kept plowing the same ground. It was hard to get cutting-edge ideas funded. I’m absolutely convinced that what started at the kitchen table will lead to a profound new understanding of and approaches to epilepsy.

Q. Is the federal government doing enough?

David: I think we should be doing more, and more medical research generally. This was an issue in the last [presidential] campaign, and I believe deeply in that. What we need to do is make sure the National Institutes of Health are presented with promising new approaches that they’re willing to invest in. CURE is an incubator for those ideas.

Q. What is the incidence rate of epilepsy?

Susan: The Insitute of Medicine says 1 in 26 Americans will develop epilepsy. There’s a growing number of senior citizens, due to brain tumors and stroke. There are also head injuries, including a good number of our veterans, who develop post-traumatic epilepsy.

Q. David, you have described epilepsy as “terrorism of the brain.” Why?

David: Because you never know when a seizure is going to strike. It can hit anytime, any place. To me, terrorism is fear of the unknown attack.

Q. How is Lauren doing today?

David: She lives in a place for people with developmental disabilities. She’s got jobs, she’s got activities and lots of friends. She’s made incredible progress. We’re grateful, but we’re still aware that every one of those days is a gift.

Q. You’ve been a senior White House adviser and campaign strategist for President Obama. What do you do next?

David: Now I’m director of the Institute of Politics at the University of Chicago, half time. I’ll be writing and speaking the other half, and kibbitzing with the president when he asks for it.

Q. Do you have a message for Republicans now that the election is over?

David: One thing about having a child dealing with something like epilepsy, it does remind you there are bigger things even than politics. There are challenges that unite us as human beings. My message is let’s try to work together to solve those things that face us all.


  1. Hope. It's something, isn't it?

  2. Lauren found seizure control on Keppra. My Sophie started taking Keppra around the time Lauren did, when it was approved for use, but you know our story. I am all for hope, but it's the rare kid that finds seizure control after that many drug medications. The Axelrods are an awesome family, though, to whom we are all indebted. I met Susan once, many years ago when I founded an organization called PACE (People Against Childhood Epilepsy) in NYC with three other families. A couple of years ago, we folded into CURE. They're AWESOME.

    1. Awesome. They definitely seem like the kind of people i'd like to take on a river trip or drink a beer with. Keppra was definitely not my cup of tea. It's incredible how people can respond so differently.

      I've definitely gathered from those-in-the-know that once you've failed a good number of them, your chances go down pretty drastically from there.

      We're all shocked about the kidney stuff. I was sure i was totally out of the woods with kidney issues after i got off of Dilantin. I don't take anti inflammatories or anything. I'm definitely getting more opinions; lamotrigine has worked the best out of anything so far. I'm loath as fuck to let it go just yet. And God willing there's newer, less dirty alternative to Depakote.

  3. And I'm surprised to hear about the kidney stuff with Vimpat -- is it from the Lamictal? Depakote is such an old drug -- Sophie was on it when she was just a baby. I can remember that the big issue with it is stomach irritability -- it wasn't effective for Sophie's seizures, but I've known many a kid that's been on it long term with great success. I'm keeping my fingers crossed for you, dear.


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