The biggest rock stars I met at the Charlie Foundation conference were the parents. First and foremost, Dawn from the KetoCookbook and www.ketocook.com, because she has given me so many recipes and ideas for making the food healthful and joyful on the diet. It was so great to say “thank you” in person! And other moms like Christine, Talia, April, Lori, Max’s mom, William’s mom…. the other moms… we were talking the language of keto and getting things done for our kids.
Just before I left I also had the chance to talk to Jim Abrahams, founder of the Charlie Foundation. He always had a crowd around him throughout the conference, but I caught him in a quiet moment and he really listened, cared and hugged me when I told him about Nora. He is genuinely empathetically relieved for every parent who gets their kid back. And on my final steps out the door, Nancy Abrahams was walking by and stopped me to thank me for coming. I’m sure that she only knew that I was another mom, and that was enough. I also got a hug and thanked her, because I know what she went through as a mom. Jim is usually the public face of the Charlie Foundation, but Nancy has been there every moment, curing their son Charlie so many years ago. Charlie was also in attendance, and although I did not meet him personally he seemed like a lovely young man.
All of the parents agreed that when you are in front of that gram scale day after day, it’s a lonely world. The professional presenters did a beautiful job of summarizing the science for the families and reiterated the four big needs: awareness, access, availability and understanding. Parents have contributions to make to all four needs, but I think parents are the primary movers for the first 3. The Charlie Foundation was started by parents, and look how far they have come. Jim summed it up for me: if there are 10 kids out there with intractable epilepsy, the diet will help 6 or 7. If there are 1,000 kids out there with intractable epilepsy, then 600 or more will get better on the diet. Do the math for the 2 million Americans with epilepsy, one-third of which are difficult to treat. He assumes that 60% will see some benefit from the diet (the studies vary). That means over 300,000 people could be helped by the diet. And there are only about 50 patients doing it in Oregon? There is more work to do. This isn’t about advancing an agenda or selling a pill, it’s about bringing this tool to families that are silently struggling and losing their kids.
I think that the biggest barrier is the perception that it is hard. When we first asked about the diet in our dark days, we were told: “The diet works great, for kids on feeding tubes. For a high-functioning opinionated kids like Nora, it’s too hard.” That perception is still there among the neurologists at the conference, who are the true believers in its efficacy. I firmly believe that innovations by parents have made it easier for both the caregiver and the kids, and we continue to make it easier for each other. This is our job.
Which brings me to my work plan. First on my list is to have lunch with Dr. Koch, head of pediatric neurology at Doernbecher who had seen Nora early on, and update him on Nora’s story. We haven’t seen him since Nora started the diet and she transferred to Dr. Wray’s care. He needs to know how far we’ve come and that it’s not too hard. He is head of pediatric neurology at Doernbecher, and every neurologist and resident needs to put the diet on the table with families at all stages of therapy choice.
Ted and I also plan to start a parent support network at Doernbecher. Ted has also been reaching out to other parents online and feeling the need to help others. When a family initiates the diet, they should have an experienced buddy family. Ideally, there would be more dietician support, social worker or psychologist support and other help available, but I understand that those services are expensive and not covered by insurance in most cases, if a family even has insurance (I will omit my diatribe on insurance). This is going to have to be a volunteer initiative. One great mom from Israel, Talia, had a cookbook of her recipes bound and given to every family who starts the diet at their hospital. What a resource! We need that kind of help at Doernbecher to provide support for families.
In my remaining free time (yes, that both a joke and sincere), I’m going to contact our local media outlets and the surrounding metro areas. Even now, it seems that most families find out about the diet through their own research or media reports, then ask their neurologists to try the diet. Public attention must be drawn to the diet as a viable treatment option, particularly for those desperate families for whom all else has failed. As a budding economist, I hold to demand-side forces: increased demand will stimulate supply.
One take-home message for everyone: be pro-active in any medical situation you encounter. You have to do your own research into your options. You have to look at the studies and stories from other people in your situation. I’ve heard that from other family members who have serious medical problems, and now I have first-hand experience. Build a team of medical advisors which includes yourself. As Nora likes to quote from the book The Princess and the Peanut Allergy, “don’t be a quiet little mouse.”
Note: In the first version of this post I stated that 50 million Americans have epilepsy. That was wrong, it is 2 million. I re-worked the numbers but this totally a back-of-the-envelope calculation to demonstrate that diet therapy could help a significant number of people in areas where it is currently underutilized.
Your website is amazing work! I came across your site in googling low carb meals for my daughter, and your raspberry scones popped up. Ever since this wonderful discovery, I’ve been reading about your journey with Nora and epilepsy, exciting recipes, and briefings on the last Charlie Foundation’s conference. We’re so new to epilepsy. My otherwise healthy, athletic, and smart school aged daughter had a grand mal this summer. Our world was turned upside down with her diagnosis of TLE. Keppra caused horrible bouts of depression, and probably even simple seizures during the day (when she’d never had any in daylight). Topamax was next, not as bad at first, but horrific in other ways. We knew she couldn’t tolerate such potent drugs, and we wanted alternatives, especially since she wasn’t having seizures during the day, and hadn’t had another grand mal ever since the first one we witnessed. At our follow up neurologist appointment, we asked about the lighter versions of keto. We were told that there are plenty of other drugs to try, and that we wouldn’t want to resort to THAT. Actually, if the diet therapies work for refractory epilepsy, then why not in milder ones, or for those “lightweights” like my daughter who just can’t “do drugs.” And unfortunately, our neurologist did not seem to take the diets seriously (and may not have been aware of the MAD or LGIT). We’re waiting for an appointment at the next closest city, at a hospital where they do Keto and MAD, but not LGIT. In the meantime, we’ve started our home version of a low glycemic diet, cutting out simple sugars and baked goods from her diet, and counting daily carbs. Our DD seems to be doing well, though her bed routine has become very rigid, and she’s missed parties due to the food issue. (I am set on trying your “sweets” so parties are not a threat.)
It’s amazing the lack of medical expertise when it comes to diet therapies. Your website is so helpful to so many of us, new and with little local support. I’m glad I got to find about the latest with Charlie’s foundation through your synopsis of your time there. Thank you!
Thanks Nat, and great job being an advocate for your daughter. Your kind words make the work of blogging worth it. We have really felt strongly lately that we can’t take our good fortune and go home (I think as Meryl said), but to pass on everything we have learned.
We started with LGIT too, then moved into MAD when we didn’t have seizure control, then just increased the “dose” of ketosis by increasing the ratio until now. Finger crossed that this is it. I think that doctors need to view the diet just like any medication. You have to be able to tolerate the side effects, and there are side effects with everything, meds and diet. If the meds are not tolerable, the diet might be the best choice.
I do think this would be harder with an older child. I think Nora has changed her idea of “sweet” a bit, but there would be a big hurdle for older kids who have more experience, more food independence, and closer ties with peers. I have to warn you that my recipes are not very sweet tasting, exploiting the bit of berries I can get into baked goods to provide the sweetness. Other keto families really like Truvia. So you can dial up the sweet taste, and use the recipes to get something that has the structure of a cupcake or other dessert.
Best of luck and keep us updated. Educate those doctors!
Hi, this is William’s mom, I meet you at the keto conference. William continues to struggle with daily seizures and we have decided to go on the keto diet again. As I was debating the decision I ran across your blog and read what you wrote a out the parents you and I immediately started crying. Sad for our children and all the have gone through, but also out of happiness, as I felt after reading your blog, it’s just meant to be for William…. another chance at the diet. We are currently at Children’s Hospital in Columbus staring the diet once again. This time I feel more confident and inspired by the conference and also all the parents I meet. So I just wanted to say thank you for your great blog, ideas and encouragement! I have also become a huge advocate of the diet and I have enjoyed ‘teaching’ most of the nurses of the miracle of this great cure for epilepsy! THANK YOU!!!
Hi Gina! I tried to track down some of you moms that I met at the conference and lost track of you. I’m so happy that you are re-inspired and will try the diet again. I will be thinking of you and William. You and I know that it’s hard but have hope and stay strong. We will be thinking of you–let us know how William is doing!