Large Gargantuan Doctor Minds™

The Third Circle of Dante's Hell, The Inferno
Gluttons

Today's visit to The Neurologist included the usual bringing her up to speed on the amounts of medication Sophie is currently on, how much of the Onfi we've weaned since the last visit and a couple of jokes about the drug Fycompa (that causes homicidal and suicidal ideation) and the drug Potiga (that causes blue lips and nails). I made the jokes, and The Neurologist gamely laughed. We also discussed the CBD and the THC and how well they're working for Sophie. She even walked in without a wheelchair! The Neurologist exclaimed. Then, apropos of nothing -- or maybe because of the homicidal/suicidal ideation and blue jokes -- she mentioned the Vagus Nerve Stimulator, a medical device that I've heard about since it was first introduced in the late 1990s when two of my friends at the time traveled to Ohio to have one put in their young children with refractory seizures. The various neurologists we've seen over the years bring it up in a sort of lethargic way, so I've never really thought of it as a compelling treatment for Sophie, and I still don't, even with what I learned today from The Neurologist -- that They've made some enhancements, namely an ability to be adjusted in smaller increments. Such is my lethargy, I don't feel like telling ya'll what the VNS is, so feel free to look it up on the Google. My mind wandered a bit when she told me about the enhancements -- toward wondering why mini-vans were first made with only one sliding door and why having them on both sides was such a genius innovation and couldn't have been done in the first place.

At worst, The Neurologist skipped over the extraordinary results of CBD and THC on my daughter. At best, she was doing her job and sharing information, and I'm grateful for that.

I'm going to call a spade a spade. Sophie's neurologist is Dr. Kalayjian. I really like and respect her. She is very supportive of what we're doing and sympathetic, always. She's a good doctor. At some point in the otherwise enervating discussion (remember that word?), she said that Another Neurologist exclaimed the other day, I need more research! I get questions all the time now about CBD, but we just don't have the research! In calling a spade a spade, I'm going to call the Another Neurologist, Dr. Heck. I've known Dr. Heck for a really long time and even sat on the board of the Epilepsy Foundation of Greater Los Angeles with her for a time and at the same table at a gala or two. She never remembers me, but that's fine. She's clearly got a large gargantuan doctor mind.™ It was Dr. Heck who summarily cut off our panel discussion about CBD last February at the Epilepsy Brain Summit. I'm calling spades, spades, when I also name Dr. Hussain as the doctor who also patronized us that afternoon and who continued to do so in private emails I exchanged with him. I believe I reached the point of no return in the email thread when I pointed out that when he was in high school, Sophie was diagnosed with infantile spasms, and that today, twenty years later, as the head of the infantile spasms program at one of the best epilepsy centers in the world, he's still using the exact same treatment (well, now we've got Vigabatrin formally approved despite it causing serious eye damage and then there's The Knife) with the same abysmal results. I might have added that it would behoove him to have a bit of humility, or maybe not. I can't remember because my tiny little mother mind™ had spontaneously combusted in the confrontation with his large gargantuan doctor mind.™

Anyhoo.

Why am I typing this out here, calling spades, spades? As I made my way through the circles of Hell that constitute the USC parking garage, mainly curse words and phrases came to mind as responses to Dr. Kalayjian's comment about Dr. Heck "needing more research." I didn't have it in me in the moment back in the office, distracted as I was by Sophie's formidable strength and drive to get up and out of the joint (no pun intended). To be honest, these phrases might have included if she and the rest of the docs got their heads out of their asses..., and f**k your godforsaken studies, and try looking them up because there are reams of them! 

Reader, I was not directing these ugly thoughts at Dr. Kalayjian, as her head is decidedly on her shoulders, and she's very supportive or at least superfically so. They were directed at Dr. Heck and all the other large, gargantuan doctor minds™. Again, these thoughts only came to me as Sophie and I stumbled through the parking garage looking for our car (I am directionally challenged). When I'd finally found it and situated Sophie in her seat, given her a cold drink and turned on the engine, all curse words flew out the top of my head and what I was left with was this:

Studies? Studies? 
More research? 
How about Sophie? 
Why the hell are you not responding to Sophie? 
Here's your study! 
Here she is!
Look at her!
Pay attention! 
Listen to me! 
Listen to others like me! 
Stop blowing us off!
Stop reporting us to Children's Services!
Stop prescribing multiple drug regimens! 
Be excited! 
Be curious! 
Take notes! 
Follow our progress! 
Take it seriously! 
Don't dismiss us as anecdote!
Open your minds!
Remember that with few exceptions, you are no more intelligent than most of the people caring for their children with refractory epilepsy and in many cases, you are less experienced!
Your field is a dark one, and you do not have all the answers!
You missed the train eighteen months ago, and I'm giving you a chance to get on board! 
Take it!

Weekend Recap: A Bit About Guns, Neurology, Meyer Lemons, Books, Food and Burkas

Driving Meyer Lemon

Those are some Meyer lemons that I picked off my friend Jenni's tree yesterday afternoon, after I dropped Oliver off for a birthday party. He finally got to do that airsoft gun thing and, of course, had a blast. He told me that there were some creepy people dressed all in camo running around. Grown men. He said that I would have taken one look and walked out. He knows me well. He asked whether he could go again with Henry, and I said that I wouldn't pay for it or drive them there. Ever. Would I let them go if they paid with their own money? Why, yes, I would, at this point. I figure that if I don't let them do these things, they 'll do them all the time when they get older. They might actually be that grown man in camo running around in Lawndale, California pretending to be a soldier.

Anyhoo.

Later this week, I'm participating in the Epilepsy Foundation of Greater Los Angeles conference/summit. On Friday, I'm sitting on a panel with a few other people to discuss CBD in front of a whole bunch of neurologists and physicians. The other participants include an eminent male neurologist from UCLA, an emergency room physician who is also a father of a child with epilepsy and a woman who has something to do with Realm of Caring, I think. The UCLA neuro is in charge of the show and sent over a suggestion for how the panel discussion should proceed. I am evidently first, and he listed my name like this:

1. Start with strictly parent viewpoint - Elizabeth -- I'm assuming you're not involved in research or healthcare.

And so on. Reader, I had to do it. I had to respond with my characteristic thinly veiled irritation. The veil is, of course, irony and black humor. I'll give a fabulous prize to the first person who guesses why I was irritated and what I might have said. I should add that The Neurologist is a great guy, that he responded to me appropriately and with great humor and that we are all looking forward to the weekend. If you remember, the last time I spoke about CBD, I was told that it was as if a bomb had been let off in the room. Maybe this time I'll wear a leotard and light sparklers. On Saturday's Family Day, I'll be with my peeps, showing the Extreme Parenting Video Project that I made some years ago with Erika and Phil and talking a bit about the journey I've been on with Sophie since she's been diagnosed. I guess I should wear the leotard to that event as well, or maybe a burka to suggest the complete erasure of my identity over the last two decades.

What did you do today, Reader? I did some more purging -- lots and lots of it. Frankly, though, my room still looks like the same, cluttered somewhat bohemian space it looked like before. The Barbie closet is sleeker, though, and I threw out a lot of papers. I flipped through some old journals and had to talk myself out of a deep depression. Suffice it to say that there is nothing new under the sun.

I forgot to tell ya'll about Friday night's Books & Bakes. I think it might have been the best one ever. We talked and laughed about John Lanchester's really great novel The Debt to Pleasure. It'd be hard to describe it, but think travelogue, murder mystery, erudite food criticism, recipes, laugh aloud wittticisms and a creepy serial killer. Here's what I cooked:

Provencal Fish Stew
Toasted Baguette with Aioli
Roasted Tomatoes with Farro
Green Salad
Espresso Creme Brulee

Here's what we drank:

Lillet
Pimm's Cup
Rose Wine
Water

The next book for the salon is Anthony Marra's A Constellation of Vital Phenomena. It's happening on April 17th at 7:00 pm. Please come if you can.

Love,

Strictly Parent Viewpoint Elizabeth

The Epilepsy Walk at the Rose Bowl and the Disappointing Fate of Ollie's Lemonade Stand

Oliver, his friend Mac and The Husband were up past midnight last night, preparing lemonade and chocolate chip cookies for today's End Epilepsy Walk at the Rose Bowl in Pasadena. This morning, they rose at 5:30 to pack up the car and drive over there to set it up:

Henry, Sophie and I joined them a few hours later:

Ollie's Lemonade Stand was in full swing when we got there, and some of my favorite people came to support us and Team Sophalofa:

Here's our team:

Here are some random shots:

Here's the Quarterback of UCLA's Bruins -- very cool guy who brought in a ton of money in honor of his sister who has epilepsy:

Here's Oliver with Henry, a seizure dog, courtesy of a canine therapy group that was founded by a high school classmate of mine in Atlanta, Georgia!

So, all was well -- until the unexpected happened. The Health Department showed up and Shut Ollie's Lemonade Stand DOWN for operating without a permit.

Holy crapola, right? And what the hey and WTF?

Oliver was devastated, to tell you the truth. He and his father had worked so hard, and he had hoped to make many hundreds of dollars, a significant portion of which he intended to donate to the Epilepsy Foundation. Yes, we told him how proud we were of him, how this was sort of a lesson in entrepreneurship, how frustrating these things are (it was difficult not to rant and rave against a bullshit government agency, but we didn't. I think at one point, The Husband who is generally quite the ranter and raver, particularly about America, said that the guy was just doing his job). It looked like the whole day was going to be ruined for him -- Oliver is not one to let things roll off his back, and I steeled myself for gloom and doom and sturm und drang. But do you know what that boy did after moaning and groaning a bit? He proceeded to help the Epilepsy Foundation give out the lemonade and chocolate chip cookies for free. Here he is being interviewed as a sibling of a person with epilepsy. I'm not sure where this footage will appear, but I'll keep you posted.

I was in tears and so proud of him.

So, all in all, the lemonade stand was a success in that Oliver learned about starting a business and dealing with the inevitable frustrations that come with entrepreneurship. They also made a good amount of money before the shut-down, and hundreds of people enjoyed the best lemonade and cookies in Los Angeles.


Thank you Craig and Carmen, Lisa, Bridgette, Bob, and Maccabee for coming out to support us. And thanks to all of you who donated so generously. We love you!

If you'd like to donate to Team Sophalofa, it's not too late. Here's the link to help us to END EPILEPSY.

Meteors, Dyslexia, Tea Baggers and Lemonade

So, it's Sunday. I read about meteors flying over the mid-West, and Ted Cruz, the heinous Tea Bagger senator from Texas who won't give up his paycheck if the government is shut down but thinks it's all right that 800,000 soldiers will have theirs frozen. I fostered a pretty spirited debate on Facebook about the merits of the Affordable Care Act, and how it's going to help so many of us despite its problems. I feel nervous that the Tea Baggers are going to prevail and wish they'd all calm down and let the reform play out. I'm weary of the people who constantly whine about how our political discourse has disintegrated and wish they'd stop whining and say something in addition to how our political discourse has disintegrated. And yes, I'm perfectly aware that it's the Tea Party and not the Tea Baggers. They'll always be tea baggers to me, and I don't give a damn if it's offensive.

 Oliver is outside hawking lemonade again and cupcakes, this time, in an effort to raise money for fishing supplies and the Epilepsy Foundation of Greater Los Angeles. I had a talk last night with a friend's boyfriend who told me about his fascinating youth, growing up in Nebraska, how he was always in trouble, on the road, really, to jail,  his unruly behavior in part due to what was later determined to be dyslexia. It all turned out fine -- more than fine -- and that turning out happened when he learned of his strengths, not his deficits, when his mother persevered, when he made drastic and dramatic changes in his life. I'm reading a book by Ben Foss called The Dyslexia Empowerment Plan, and it's illuminating. Sometimes, when I read Foss' descriptions of himself in childhood, I feel as if I'm reading about Oliver, and little by little my gut instincts about my remarkable child are affirmed. When Oliver was young -- let's say three or four -- he was already such a pistol, as my father would say, that we would shake our heads and laugh, ruefully. A neighbor who has a powerful job in publicity once told me that she is always nice to Oliver because one day we're all going to be working for him. The book is not about overcoming learning disabilities but finding one's strengths and recognizing that dyslexia -- disability -- is just part of one's identity, something to accept, to almost embrace. Simple -- but radical -- stuff.  I think, sometimes, that part of my job with Oliver is to literally get him through school and out, to support him in whatever way I can and to guide him to constantly see his strengths and pursue them.

I price my lemonade at $.75. he says. Because most people will give me a dollar and tell me to keep the change.

So, Ted Cruz? Overcome him like a disease. Oliver? Help him to accept his dyslexia and discover his strengths.

What's up with you, Reader?

Living Well With and the Living Hell of Epilepsy

For many, many years, efforts to remove the stigma that epilepsy carries focused on a "living well with epilepsy" approach. "Normal" people who also "happened" to have seizures but who otherwise lived "normal" and productive lives were paraded out in advertisements and marketing materials, and while this helped to dispel myths about epilepsy, the approach neglected a significant number of people whose lives were severely affected by the disease. What happened because of that is a woeful under-funding for research into the causes of and cures for the epilepsies, and, equally as important, a lack of knowledge and awareness of just how serious the disease can be, including a higher incidence of death than breast cancer. The mental health aspects of the disease -- for both the person suffering the seizures and the parents and siblings of that person -- are often unacknowledged despite grim statistics, and the work I've done recently with national groups trying to remedy the inadequacies of the healthcare system have only just pecked at the surface. I call that number -- the nearly 30% of people with epilepsy whose seizures are not controlled and whose lives are significantly impacted by the diseases as those who are experiencing The Living Hell That is Epilepsy.

With that in mind, the Los Angeles affiliate of the Epilepsy Foundation of America produced the following video that they showed at their most recent fundraiser. I think it deserves to be seen and shared and would appreciate you doing so if you have a moment.

Occidental College, Lacrosse, Obama's Brain Initiative, End Epilepsy and Us

The above photo is of lacrosse team captain Lauren Wemple of Occidental College, a young woman who is doing the Epilepsy Foundation of Greater Los Angeles and our family an enormous favor this Saturday afternoon. Lauren is a senior at Occidental College and has arranged a Purple Game, getting her team-mates and student body to participate in raising awareness and funds for epilepsy research. Lauren is evidently a kick-ass lacrosse player and also has epilepsy. I have not yet met her personally but have corresponded with her and am so impressed. My entire family, though, is so excited to meet her this Saturday afternoon when our family is being honored! How exciting is that?

You can read more about Lauren and her team here.

You can donate to The Purple Game here.

You can like The Purple Game on Facebook here.

Here's the website for the Epilepsy Foundation of Greater Los Angeles

You can come to the event on Saturday, watch some great lacrosse and hear our speeches both before the game and during the half-time. I will tell our story, talk a little about epilepsy and mention Obama's Brain Initiative (the POTUS is an alumnus of Occidental College).

I will be dancing, as well.

Just kidding. I wanted to make sure that you were paying attention! If you're in the area, please come -- the event is free and promises to be wonderful. And if you're not in the area, I'll post photos sometime over the weekend!

Help Wanted and The Epilepsy Walk

Looking for a scientist/humanitarian to find the reasons and cure for epilepsy, particularly pediatric cases. Applicant must know the brain inside and out and have witnessed the daily life of a child with uncontrolled epilepsy. Interpersonal skills a must as is a total disdain for insurance companies and dubious appreciation of pharmaceuticals. Assumption that pharmaceutical discoveries will be considered successful ONLY if side effects are minimal to nonexistent as defined by parents of child or child him or herself. Cure must be complete and total; 30% or 1/3 efficacy rate is not acceptable. Applicant must have ability to outwit the brain.

Sobering Statistics:

1. Epilepsy in America is as common as breast cancer and takes as many lives.
2. One in 10 people will suffer a seizure in their lifetimes.
3. The mortality rate for people with epilepsy is 2 to 3 times HIGHER than that of the general population.
4. The risk of sudden death for people with epilepsy is 24 times higher than that of the general population.
5. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it.
6. This number is MORE than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease COMBINED.
7. Public and private funding for research lags far behind other neurological afflictions, at $35 per patient. Compare this with $129 for Alzheimer's and $280 for multiple sclerosis).

This Sunday, October 28th, is the Epilepsy Foundation of Greater Los Angeles' End Epilepsy Walk, and Team Sophie will be at the Rose Bowl in beautiful Pasadena, walking doggedly. I know these walks and ribbons and colored days can be tiresome -- I myself have taken a couple years off in a sort of anti-non-profit foundation sabbatical, but I'm back, as are Henry, Oliver, Sophie and The Husband. Sophie had a seizure last night, again, at the dinner table that would scare the beejesus out of any normal family (as Oliver put it). I desperately wish that they'd stop, and while I know it might not happen soon enough, with enough support, enough money and enough doggedness, some kind of impact against this scourge will be made.  I'm making a last ditch effort to sign up more members and get more donations, so if you'd like to support us, please go to the Team Sophie page! And thank you, thank you, thank you to all of those who have already donated or who are actually walking with us! I so appreciate it.

Team Sophie the Mermaid and the Epilepsy Run/Walk

After a year-long sabbatical where I wanted nothing to do with epilepsy and raising money to end epilepsy, I pulled myself up by my bootstraps (Republicans, love me!) and signed up to be Team Captain for this year's End Epilepsy Walk/Run. I'm forming my team now -- and some of you have already gotten notified and have generously donated -- but I'll provide links to it at a later date.

Today, I want to highlight one of my dearest blogger friends, artist Kim from Art in Red Wagons and Words On Paper Scraps. Kim has graciously created a special section in her etsy shop called Team Sophie and is donating a portion of her proceeds to our cause!

If you haven't visited Kim before and want to see some extraordinary drawing, painting and crafting, as well as beautiful writing and over-the-top gorgeous photography of the Pacific Northwest, you need to hop on over there. If you're so inclined, purchase one of those darling shells with the mermaids, keep it in your purse or pocket and help Sophie and all those like her.

Here's the link to the shop:  Etsy Team Sophie
Here's the link to join our team and/or make a donation: