Ok, after this one we are going back to Nora’s story. But Nora’s story is just one of many, and we gain hope and inspiration from the other parents who have walked our path before us.

One other aside: I’m tired of hearing the ketogenic diet described as a “miracle.” It might look like it from the outside and might feel like it when seizures stop, but it’s scientifically studied, medically proven, and relentless daily work for the patients, parents and loved ones administering the diet. No magic or divine intervention required.

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.

Wow. 450 doctors, researchers, dietitians and other medical professionals, with a handful of parents in the room. Four 2-hour blocks of 20 minute presentations on facets of diet therapy for neurological disorders from 8 am to 5 pm yesterday, same format from 8-12 this morning. I’m on information overload. Actually, I fell asleep last night at 6pm when I arrived back at the hotel, awoke at 9:30pm, and went back to bed until 6:30am this morning. I needed 12 hours of sleep to process.

And these aren’t 450 shmoes talking about a fringe diet. Researchers from Korea, Japan, India, Scandinavia, Germany and the UK have been very active in diet research, along with MDs and PhDs from Harvard, John Hopkins, and other major state universities and hospitals around the country. No one here wanted to throw the drugs out the window, and several doctors alluded to the fact that this is not a “natural” treatment. As with all medical treatment, it has a host of side effects and is dangerous to use with certain underlying medical issues and without medical supervision. But it is another powerful tool, and must be considered equal to the other tools in the neurologist/epileptologist tool box.

In summary, the ketogenic diet is the most effective treatment for epilepsies that are difficult to manage or resist drug treatment (aka, “refractory” epilepsy). The latest Cochrane review of the research found 4 random control studies (although the researchers here say one was overlooked) and concluded that the ketogenic diet has “effects comparable to modern anti-epileptic drugs.” The National Institute for Health and Clinical Excellence has accepted the ketogenic diet into epilepsy treatment guidelines, although it is still considered a tertiary treatment if “appropriate” anti-epileptic drugs fail.

The diet is also more successful in some identified epileptic syndromes than others, which might give clues to how it is working in the brain. For someone with an idiopathic (unknown cause) epilepsy like Nora, its efficacy might give some clues to the origins or type of epilepsy. It is important to remember that epilepsy is a symptom with an underlying cause, but those causes are not well understood for most epilepsies.

Although the conference is organized around the ketogenic diet for epilepsy, we heard several presentations on the use of similar diet therapies for other neurological diseases. This part of the conference was intriguing, because I know someone that is affected by each one of these ailments. Like epilepsy, most arise from some underlying genetic or metabolic disfunction.

One of the most intriging, which we heard about from a clinical perspective from both a researcher and an MD-parent, is the application of diet treatment to autism. As many as 40% of autistic kids will have seizures, often at puberty, which are atypical in presentation and treatment. I would recommend the work by Jane Buckley, MD, who wrote a book about her daughter’s experience, which she presented at the symposium.

Researchers have also been inducing ketosis in rats and mice to heal traumatic head injury (the Army is funding some of this research, and yes, the researchers also induce the traumatic head injuries to see how they heal). They are also looking at use of the diet in the management of pain and inflammatory diseases. They have some promising results so far that show a short-term ketogenic diet could promote healing and reduce inflammation and pain.

We also heard presentations about research into the ketogenic diet for ALS (Lou Gehrig’s disease) and Alzheimer’s disease. In both of these cases, the hope is to slow down the progression of the disease. So far in mice, they have found that decreasing carbs (hence glucose availability) improves mitochondrial function, so neurons function longer. There was also mention of Parkinson’s and stroke patients benefitting from similar use.

One of the most exciting and possibly controversial uses of a ketogenic diet is the treatment of cancer. Dr. Joseph Maroon gave a fantastic talk about a devastating brain cancer and the potential for diet treatment. The logic is simple: glucose is cancer’s food. Cancer can’t survive on ketones, but our healthy cells can. There is some exciting research and anecdotal evidence out there, so I would stay tuned to those developments while keeping traditional effective treatments in the tool box.

Another researcher gave a startling presentation on using the ketogenic diet to reverse diabetic kidney failure in mice. He said that when he proposed this research project to one of his research fellows, she doubted that they would even get the ethics approval for the project because it’s a mousy death sentence. Diabetics die from ketoacidosis (which is different from ketosis on the diet, but similar mechanism). However, they got approval to do the study and not only did the mice not die, but their diabetes-induced kidney disease was reversed. They had to stop the experiment because the control mice (the non-diabetic mice) were dying of natural causes first! All of the diabetic markers were reversed in these mice, and his explanation was the absence of glucose. By withholding carbs from the diabetic mice and switching their fuel source to ketones, they were able to reverse the effects of the diabetes.

What many of these lines of research have in common is an underlying cause: a dysfunction of the use of carbohydrates, which are converted to glucose, in the body. One researcher laid it out as a metabolic paradox: too little carbs make us ill and too many carbs make us ill. And different bodies seem to have a different “goldilocks” zone for carbs, where are carb intake is just right. Nora’s zone is very low right now. A type 1 diabetic’s zone is very low. Someone who is genetically predisposed to type 2 diabetes has a moderately low zone. If we consistently eat outside of our carb-tolerance zone, either too little or too much, we get chronically ill. And eating on the low side of our carb-tolerance zone can be healthier than exceeding our carb tolerance because our bodies have this great back-up energy source: ketosis.

The most relevant research for all of us is about maintaining the health of the body that we have. Several doctors and researchers brought up the anti-obesity effects of the ketogenic diet. The keynote speaker on Wednesday, who I missed because I was en route, was Gary Taubes, a public health writer who brings together a lot of this science in his book “Good Calories, Bad Calories.” DO NOT try to do a full ketogenic diet on your own. What the research suggests is that we could all do to eat on the low side of our carb-tolerance level for long-term health. I personally can attest to the benefits by my small reduction in carbs since I have been administering Nora’s full ketogenic diet. I’m not going to get evangelical about it, but I do think that the science is there. We have a serious public health issue with obesity and related illnesses that is fixable with a sensible shift in diet.

There were also presentations about the basic science explaining the efficacy of the diet. In short, we still don’t know how it works. There have been studies in rats and mice that show both “morphological and functional neuroprotective effects” on the brain in diverse models. Essentially, they are studying our bodies’ power plants, the mitochondria. When the 100,000 mitochondria in each neuron get glucose, they get really excited and too much excitability becomes a seizure. By depriving the body of glucose, we don’t allow so much excitement. Ketones and the channels that they travel also have some inhibitory and protective effect on neurons. If those neurons get too excited, normal brains have some ways to shut that down. But if those shut-down mechanisms aren’t working and the brain can’t tolerate much glucose, ketones (from fat) are a replacement energy source for the mitochondria. So we deprive the body of sugar (glucose) and supply it with fats (ketones) and function without seizures. Now that I summarize it, this is what we already knew, but the current research on mice and rats provides richer detail to the biochemistry than I am able to convey here.

Ok, so we know that it works for a lot of epileptics and has promise for other diseases, even if we don’t know exactly how, particularly for epilepsies that are not controlled by the arsenal of anti-convulsant drugs. We can take it off of “fringe” status. But this needs to be more widely disseminated to front-line neurologists. I made a note when any of the MDs or PhDs made a passing comment such as “it works, BUT it’s hard.” Even these true-believers hedge their bets, but very few of them have had to do it for their kids.

At the wrap-up session, the leaders of the basic science panel summarized where we are and where we have to go. They laid out for 4 facets: awareness, availability, accessibility and understanding. They asked how clinical practice and basic research can better talk to one another. Good questions and comments were made from the audience, but I felt compelled to stand and say my piece. I get up and talk in front of a classroom twice a week for the whole school year, and never has my heart felt like it would leap out of my chest as it did today. I got in the last comment/question of the session, something like this (I didn’t write it down):

I want to thank all of you for being here for our kids who need this treatment and this research. I’m a parent of a 4 year old on the ketogenic diet. How many parents are here, by the way? (10-20 hands raise). I appreciate the comments made in the wrap up session but notice that you point out the needed ongoing relationship between clinical and research practice. Please remember to include parents in this relationship–we have your data! We are here doing this diet every day and we need to be a part of this conversation. You are building a platform for the diet in the medical world, but we are the third leg of the stool.

To which the other parents started a round of applause, joined by the rest of the room. I was moved by the reception, and relieved to have said it. Several parents (and some others) recognized me after we adjourned and thanked me for my comment, which was gratifying. Even in this great group of people who are aware that they are marginalized for advancing this treatment, the very beneficiaries of this treatment are inadvertently marginalized. I don’t feel that there are any bad intentions; this is just the status quo of the medical and scientific community. At least twice I was told that I am a “well-informed parent,” as if there was any other way to be. And it wasn’t just me feeling like I was invisible while in plain sight. After my comment, dedicated and well-informed parents came out of the woodwork, and I look forward to meeting more of them tomorrow.

Again I want to point out the first 3 points made in wrap-up session: awareness, availability, and accessibility. Parents have a huge role to play in those areas by reaching out to one another. When you are in the neurologists office, you are at your most vulnerable. If a neurologist tells you it’s too hard, as many here at this meeting were still saying as an aside, you might not do it. We need to talk to the neurologists and give them the science and tell them that it’s not THAT hard, but we need to be there for parents to make it not-so-hard. If you think the ketogenic diet is hard, try watching your kid have seizures day in and day out. That’s hard. And we can make this much easier for each other by paving the way for others.

I look forward to family day tomorrow to see how other parents are reaching out, and to thank those that paved the way for us. Then we will work on continuing to lay out a path for others. That’s what Jim and Nancy Abrahams did when they started the Charlie Foundation. Meryl Streep did it when she took the lead role in “First Do No Harm,” and that was her call to action tonight. We will pay it forward.