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.