Jim: Sure. Charlie was a normal, happy, regular baby until around his first birthday. (Inaudible) 00.30 started noticing at first subtle fits, and then he'd throw his arms up in the air or something. Then pretty short order we took him to a pediatrician. Immediately he had a seizure in front of her. She almost immediately said you're in the wrong place, you need to see a neurologist, and so started a long procession of neurologists (inaudible) 00.51 by the fact that the drugs were almost equally awful. Then eventually they couldn't stop the seizures, so he had a brain operation. Then that didn't work. So we were basically told that this boy was going to pretty much just seize himself into oblivion and probably wind up in a home somewhere. The word is progressive retardation. So in an attempt to figure out how Charlie and the rest of us in the family were going to make it through such a bleak prognosis, I started doing some reading on my own. These were again before you could push a button on the internet and find out everything. I came across this medical textbook of a ketogenic diet. It's a dietary therapy for children with difficult to control seizures. It was invested in the Mayo Clinic in the early 1920s, and during the 20s, 30s, 40s, 50s, 60s was one of the first line therapies that we'd use with children for seizures, but as drugs or medication became invested, it kind of fell into disfavor. So by the time 1993 rolled around, there were very few places where you could find that administered the diet. Hopkins was about the only one, John Hopkins. So we did try with John Hopkins, put him on a ketogenic diet, in two days his seizures were gone.

Chris: That was after how many years of going through seizures?

Jim: It was a year. He started having seizures right about his first birthday.

Chris: So with Charlie you had a year of seizures. You actually went through brain surgery with him. What did they do for the brain surgery?

Jim: Well he had a cyst in his left ventricle, and we probably all have cysts in our left ventricles because we don't get MRIs on our brains. They couldn't come up with any explanation for the seizures. I might add that 70% with all people with seizure disorders never figure out why they have a seizure. For the 20% who do, you or I could figure it out. It's usually either hereditary, or there's a brain trauma that results in a seizure disorder, but Charlie was like 70% of folks who have seizures, and they could never figure out a reason why. Their best guess was a cyst in his left ventricle. So they did a pretty hideous operation to drain the cyst in his left ventricle. He was about 18 months old at the time, and it didn't work. You know to see a little guy this age, you know your child, being wheeled into brain surgery on a gurney, it was very difficult. Statistically 70% of people with seizure disorders have their seizures controlled with the first medication that they try, but after that the odds of medication stopping the seizure disorder become more and more remote. There's a 10 to 15% chance a second medication will work, and only a 20% chance medications will ever work after the failure of the first medication. Frequently when you try a new medication, there's what they call the honeymoon period when it works temporarily and then somehow the brain figures a way to reroute itself around that medication. The other important piece of information to factor into all of this is that these medications have very serious side effects. So even in a case where a person has seizures controlled, they trade off between the control of seizures and the damaging side effects.

Chris: From this experience with your son, you really forged ahead, researched, and found solutions. One of those solutions was the ketogenic diet. You've started charliefoundation.org. For our listeners that may be struggling with epilepsy, what is the ketogenic diet?

Jim: Well the ketogenic diet, it's been known since Hippocrates, who spoke about the benefits of fasting on the brain, that fasting in some way helps the brain. Obviously we can't fast indefinitely, but when we do fast, what the body does is start to burn fat for energy as opposed to carbohydrates, the way most people do. A byproduct of burning carbohydrates is your body produces ketone bodies. The best science today thinks that these ketone bodies along with lower blood sugar tend to suppress seizures. So the ketogenic diet is a high-fat diet that allows enough protein for growth, no sugar, limited carbohydrate. Because it is nutritionally not sufficient, it's supplemented by vitamins. The diet's history, as I mentioned, started in 1921 at the Mayo Clinic. It was used at lots of hospitals around the United States for many years. One of the doctors who really became a huge advocate was a guy named Livingston at Johns Hopkins. Livingston trained with a fellow name John Freeman, Dr. John Freeman at Johns Hopkins starting in about the 70s, 1970s. Dr. Freeman became a huge advocate of the diet because he saw it worked on so many kids. He still had a dietician around when it got to be the 90s, who was very proficient in calculating the ketogenic diet for kids. She was on the verge of retirement. So about when we found the diet, Hopkins was I think the only hospital around, and Dr. John Freeman, who really were vocal champions of the diet.

Chris: So who can be helped by this diet?

Jim: Well for some forms of epilepsy, it is the only treatment. There are very high success rates with (inaudible) 06.34 syndrome. There are different kinds of epilepsy that respond differently. Even then it's sort of subjective. You never know to what extent the child will respond to the diet. However, that said there has recently at long last been a class one, which is the gold standard of scientific studies, released about the efficacy of the ketogenic diet, done by Dr. (inaudible)07.03 in London. It verified what we've all known for many, many years, and that is that 60 to 70% of children who are put on the diet have improvement that is measured by fewer seizures and less medications. For about 20% to 25% they are cured. Turns out that our son, Charlie, was just one on a long assembly line of children who were given every available medication and then surgical procedures before they had the opportunity to change what they eat. So he was just one of many children. If you extrapolate that to the 1920s when the diet was invented and you think how many millions of children have epilepsy around the world, Charlie was one of the lucky few who had the chance to try to diet. Charlie by the way is now 17, has no recollection of his epilepsy, of being on the ketogenic diet, has never taken another antiepileptic medication, and eats anything he wants.

Chris: Does the Charlie Foundation have any idea of you know how many thousands of children with epilepsy that this is helping?

Jim: No. Unfortunately there's no sort of central clearing out for dietary therapy. The number is expanding. I know that in 1994 when we started the foundation, there was basically one hospital that used the diet. Today there are over 140 worldwide hospitals that use the diet. There are new more liberal forms of the diet. The diet is strict. One advantage of using it with a younger child is you can control everything he eats, but as kids get older, they have to be more active participants in the therapy. So there are now more liberal versions of the diet, which has made it much more accessible to older kids and adults. Not only is it a more liberal form of the diet, but because it is, it's made it more accessible in other parts of the world. There's one version of the diet that's called a low-glycemic index treatment, which is just a fancy word (inaudible) 09.07 sugar. That is akin to the South Beach Diet. Then there's another version of the ketogenic diet called modified Atkins Diet, which is similar to the Atkins Diet.

Chris: So if a parent has a child with epilepsy and they go to their physician, is it likely that they're going to hear about ketogenic diet, or how do they go about getting help with this.

Jim: Well hopefully anyone who's interested in the information will check out our web site at charliefoundation.org because on there we have a lot of information about the diet. We also have a state by state listing of hospitals that have ketogenic diet programs. In order for a child to be put on a diet, it really must be done in conjunction with an experienced dietician. Because it is complicated, most kids are on medications, there are a variety of (inaudible) 10.03 that have to be measured and to calculate the meal plan for a child that's in dietary therapy. So it's important to find a ketogenic diet center, and they're all affiliated with hospitals around the United States and around the world. If a parent is interested in looking into finding a hospital in their neighborhood, I would hope that they go to Charlie Foundation because we try to keep the most current list of active, successful ketogenic diet programs available.

Chris: For more interviews on health, mind, body and spirit, go to Michael Senoff's hardtofindseminars.com. Jim, one of the things with the ketogenic diet, how long do children have to be on it before they start to see results?

Jim: That's an excellent question. In our case, we were very fortunate. With Charlie he literally went from having dozens and frequently over 100 a seizers a day t zero in two days. It was a miracle. At first, you're not sure you believe it. At first you don't trust it's happening. Quite honestly I think Nancy and I are like many parents of kids who had seizure disorders and recovered (inaudible) 11.20 12 years since he's had a seizure, but part of you is waiting for the other shoe to drop. (Inaudible) 11:26 you know he's made it through puberty and all that. So I can think we can safely say he's cured. But when it happens, there's kind of a two-fold (inaudible) 11.32. First is oh my God, we've had this miracle and our gratitude. The other half is anger because you realize that everything that he was put through was unnecessary. The drugs weren't necessary. The surgery was not necessary. All we needed was information about the ketogenic diet and the statistics that I was mentioning earlier, and we would have found a dietician. We would've put him on the diet. So that year of seizures and drugs on his developing. They say that the first two years of development of a baby's brain...Charlie was basically robbed of one of those years. That wasn't necessary. That was because no one told us about the diet. So you know that kicks in too, this kind of anger at what went on. The desire to put a silver lining on the horror of what we went through by at least being able to tell other people, look there is this alternative to drugs and surgery, it is available. Part of the reaction after the euphoria and the gratitude is the anger that Charlie was put through all these treatments and harsh medications, terrible side effects, a failed brain surgery unnecessarily. Part of the emotions that I think a lot of us parents go through is anger and a desire to put a silver lining on this kind of abuse by letting other parents know that they don't have to subject their children to medications and surgeries but they can merely change what their child eats is a pretty big (inaudible) 13.13.

Chris: When you started the charliefoundation.org, you were inundated with letters right?

Jim: Yeah. Those were days of letters. Remember those. We weren't sure what we were going to do. We just knew we wanted to try to get the word out, so we made an instructional video about the diet, and one of the fellows who worked on the crew when we were making the instructional video knew some producers from Dateline NBC. He told his producer friend from Dateline NBC about this very interesting diet that's for difficult to control seizures. So Dateline came out, and they covered Charlie's story. Then they came out two more times in subsequent years to see what had happened, if Charlie's recovery had in truth been a cure, how he was doing, and how the Charlie Foundation was doing. So it wound up getting a lot of publicity for dietary therapy. I did get literally rooms full of letters from people not only wanting more information but because the therapy had been around since the 1920s, there were lots of people who were on the diet subsequent to the 1920s, had their epilepsy cured, and went on with life. So we heard from a bunch of people who had been on the diet. One of the letters we got was from the mom of a boy who was on the diet in the 1970s. She had a very dramatic story about how sick her son was, how much trouble she had finding the diet, and in the case of her family they went broke because his medical bills were overwhelming. The siblings of the sick kid had to go live with other people. I mean it was a very dramatic story. But eventually they did find the ketogenic diet. The boy was cured of his epilepsy and they went on with life. So when I read their story, I was kind of overwhelmed and thought "Wow, this would be another really good way to get information out about the ketogenic diet." Then we made a movie about that family's struggle to find the diet and the success they had with the diet. It was called First, Do No Harm, and it starred Meryl Streep.

Chris: Can people order that on your web site, or can they find it in your video store? Where do they get that?

Jim: Certainly you can get it through the charliefoundation.org. I think you know through stuff like Netflix. Interestingly their story they went through pretty dramatic stuff in order to find the diet, but basically their story is all of our stories. Any of us with a child with difficult to control seizures. You know I think we all go through this thing. Certainly my family did and most of the families I've talked (inaudible) 13.13 years where we walk into a physician's office and we want to trust them. We want to believe they know what's best. It's a much simpler mindset. Unfortunately, and especially on a case with difficult seizure disorders, that's not always the case. Physicians don't know about the diet or don't recommend the diet for any number of reasons, the primary reason being they don't have access to a dietician who is conversant in it. So part of the learning curve I found, and that's the curve to go through, is to each surgeon and find a second opinion and to find alternatives to the drugs and surgery. Today, the information and the hospitals are available and accessible to all of us who live in the United States. So parenthetically around the world, it’s becoming much more popular. But my suggestion is keep searching, trust your instinct. If you feel uncomfortable medicating your child and still having to experience seizures. If any of that makes you feel uncomfortable, trust your instincts because there are alternatives, and it’s just a matter of speaking them out. I can tell you what the common objections are from physicians about the diet and from neurologists about the diet. Well they'll say number one it's high fat. I might add that Charlie was on the diet for five years. Most kids are on it for about two years. After five years and during those five years, we tested his cholesterol levels frequently. They were always normal. Another argument is that it can stunt the child's growth. I'm 5'10", Charlie is 6'1", Charlie's mom is 5'9". So I'm not sure that it's stunted his growth. He's the same height as both his brother and sister. Another argument is that it's too difficult. When you say it's too difficult, you have to measure too difficult as compared to what. I can't imagine too many things more difficult than watching your child having seizures and taking those medications. Finally, I think the most insidious argument made by the medical folks against the diet is that there's no science behind the diet. Number one, that is false. Number two, when you hear that argument you assume that they're coming from a place of science. (Inaudible) 18.18 every one of those medications, every one of the combinations of medications that they put someone with seizure disorder on have been tested scientifically. The interactions of the medications (inaudible) 18.33. Well, that's just false. There are no blind studies. Nor are there studies about interactions. So to use the argument that there's no science, I find it a very dark argument. What we found is the real reason the ketogenic diet is underutilized is because there are dieticians who are familiar with it and know how to administer it with a child. Where there are educated dieticians, educated in terms of the ketogenic diet, they have very successful ketogenic diet programs at those hospitals that have access to these dieticians. So one thing that we found is the quickest way to get to the heart of the problem of under utilization is to help educate the dietician, teach them how to calculate meal plans, teach them the various nuances of the diet, so that they can go back to their hospitals in whatever city. Then the neurologists will be much more likely to subscribe a dietary therapy when he knows or she knows that they have access to an educated dietician. About a year ago, we actually had an international symposium on dietary therapies that we sponsored, that was attended by over 300 physicians, dieticians, and nurses from all over the world. That was a very exciting event. Also, it has helped to spread the word about the diet throughout the world. One of the people I work with at the foundation is a very experienced dietician who has been working with the ketogenic diet since 1993. Part of her job and that she largely does is travels to hospitals around the world to teach hospitals individually how to go about ketogenic diet programs in their hospital. She's been to over 75 hospitals in the last two years all over the world, Dubai, Korea, South America, and all over the United States helping teach the ketogenic diet.

Chris: This is Chris Costello reporting for Michael Senoff's hardtofindseminars.com. Around the world how is the ketogenic diet? Is it well known?

Jim: That's an interesting question too because it's of course not well known enough, but it is being accepted with more enthusiasm in the United States, emerging countries that don't have the capability of purchasing the variety of antiepileptic medications are more enthusiastic about accepting a dietary therapy than we are here in the United States where it's so much easier to pop a pill. As I mentioned, there's (inaudible) 21.19 70% of kids who start having seizures have their seizures controlled with the first medication. But after that the medicines don't work nearly as well, and dietary therapy should come into play very quickly. It is a high-fat diet, but as opposed to even when Charlie was on the diet, when meal plans were pretty yucky looking, it's become much more sophisticated. We have a bunch of meal plans on The Charlie Foundation web site with photos of meals that kids eat. It looks very delicious, nutritious, and appetizing. They have figured out ways to incorporate large amounts of fat. There are fewer carbohydrates and vegetables such as broccoli and spinach, so there are more of those kind of vegetables than carbohydrate-rich vegetables. Every meal is weighed out. Every portion of every meal is weighed out on a gram scale. The kids have to eat all of their allotment because they are calculated based on their meal weight for their height. So they have to eat all of every meal, no more, no less. So it's not a walk on the beach, but it's a cure that the entire family can (inaudible) 22.37. You know it involves the whole family's activities. Mom, dad, and siblings can all be involved in helping cure their child or siblings. It can be a positive experience for the family.

Chris: Does this work for adults also?

Jim: Yes. Historically going back to the 1930s, there have been studies published that it has the same positive effect on adults as it does with kids. The main difficulty is it is so restrictive and sometimes it's difficult for adults to comply with the diet, and it's certainly more difficult to find an adult neurologist who subscribes to the diet. With that said, many hospitals today are using I think it's the modified Atkins diet for adults with difficult to control seizures who want to get off the drugs and who are still having occasional seizures. It's becoming a much more popular and readily available therapy. So it does work as well. There are, especially through modified Atkins diets, it's much more available than it was just two years ago. Modified Atkins was basically invented within the last five to six years. Modified Atkins has only been out there for a few years, so how long people stay on that I don't think is absolutely defined. But in terms of ketogenic diet, the full blow ketogenic diet, the term is usually about two years and go back to regular foods (inaudible)24.02.

Chris: Jim thank you so much for spending the time with us today. If people want to find out more, they can go to charliefoundation.org. Thank you so much Jim.

Jim: I want to thank you for giving us the opportunity to help spread the word.

Chris: That's the end of our interview, and I hope you've enjoyed it. For more great health-related interviews, go to Michael Senoff's hardtofindseminars.com.