Read an Excerpt
Good News for People with Bad News
Recovery Stories Everyone Must Know About
By Nyema Hermiston Balboa Press
Copyright © 2016 Nyema Hermiston RN ND Adv Dip Hom.
All rights reserved.
ISBN: 978-1-5043-0065-0
CHAPTER 1
Charlie Abrahams, 21 years
Santa Monica, California, USA
Diagnosed with epilepsy at one year
Interview with Jim Abrahams, Charlie's father
On his first birthday, Charlie started having seizures. At first they were very subtle, but they quickly escalated into much more dramatic seizures, so Nancy and I started taking him to doctors. We felt fortunate, because we had access to several of the leading paediatric neurologists in the United States, and Charlie had seizures in all of their arms. They were in total agreement about what to do. They all said that as treatment options you can give these kids drugs and you can do brain surgery. They ran through every available drug on Charlie, with all the attending side effects of constipation, sleeplessness, or drowsiness. At one point, he was sleeping 18 hours a day – he sort of became a zombie. There was a rash for a while. They used the drugs in combination with each other too, and nothing stopped his seizures; nothing ever stopped his seizures. He got sicker and sicker, and was having dozens of seizures a day. So then they recommended a brain operation, which was a hideous experience. That didn't stop his seizures either; about a day after he got out of the hospital from the surgery, the seizures returned. We were told by the last doctor we saw, that if the surgery didn't work, to expect a life of continued seizures and what they called 'progressive retardation'.
So I started doing research; this is back in 1993 now. Not with any thought of finding a cure for him, or even to improve his health. It wasn't to find any alternate therapy for him. You know, while watching this going on and participating in this devastating diagnosis, it was to try to figure out – how do these kids make it through life? What happens? And how do their families make it through life?
I started doing some research – and trust me, I'm not much of a researcher, but if you go to a medical library and you start looking up paediatric epilepsy, you come across the ketogenic diet. It's in all the texts, going back to 1921, when it was invented at the Mayo Clinic in the United States. All the way back from the 1920s through to 1992 at the time, there was anecdotal evidence published by different doctors at different hospitals, saying that the ketogenic diet improved more than half the kids that went on it. A significant percentage, 20 to 30 per cent, were cured, which is kind of an outstanding thing to come across, especially when your kid's been beat up like that. The last study I came across had actually been published in 1992, and I was doing my research in 1993. The 1992 study was published in Epilepsia, which is the premier epilepsy medical journal, I think worldwide, certainly in the United States. In that study, written by the folks at Johns Hopkins Hospital, they said they had tried the ketogenic diet on 58 consecutive kids with really bad epilepsy – multiple daily seizures, multiple drugs and all that stuff. Of those 58 kids, 29 per cent achieved complete seizure control, and another 30 per cent were significantly improved, with fewer seizures and fewer drugs. But none of these world-class neurologists we had taken Charlie to see ever mentioned a syllable about the ketogenic diet to us, yet their premier journal had this published, just the year before, as well as all the evidence going back to the 1920s.
So I called up the guy from Johns Hopkins who had written the article, the 1992 study, and he said: "Send me Charlie's medical records, bring Charlie, and we'll try the diet with him." Nancy, Charlie and I flew across the country from Los Angeles on the West Coast to Baltimore on the East Coast. Johns Hopkins had the benefit of having a dietician on the staff who was very conversant in the ketogenic diet, because she was around during it's heyday; Mrs Kelly – she's kind of an angel. So she put Charlie on the diet. At the time, Charlie was having dozens and sometimes as many as a hundred seizures a day. In two days, the seizures were gone. Even though I've told this story hundreds of times, I still get choked up when I tell it.
When Charlie started the diet, he was on four medications. Within a month of starting the diet, they took him off all the medicine. He was drug-free and seizure-free. He was on the diet for five years, and he was cured. He's never taken another pill, he eats anything he wants, and just lives a normal life.
Before the diet, Charlie had that surgery, for which Nancy and I will forever feel guilty. I think he has been affected by the seizures, the medication, and the surgery. They say the first two years of a child's life are the most important in terms of brain development and his brain got robbed of its second year. He has some autism. He's a happy kid now, but did the surgery take a bite out of him? Absolutely.
It was tough doing the diet. Today, one of the primary excuses for not telling families about the diet, the popular phrase used by the medical profession, is that it's a "drastic lifestyle change". Granted, it is a drastic lifestyle change, and I wouldn't recommend it for you or for me, but if you have a kid who is experiencing multiple seizures every day and who's on multiple drugs, then it's a vastly improved lifestyle change. Everything is 'as compared to what?' Compared to eating just a normal diet, it's not that great, but compared to a lifetime of drugs and seizures, it's a walk on the beach.
The ketogenic diet is basically a high-fat, no-sugar, limited-carbohydrate diet that mimics the effects of fasting. When you burn fat for energy (instead of carbohydrates the way you and I are doing right now) you produce ketone bodies. The thought is that a combination of these ketone bodies in combination with low blood glucose help to suppress seizures. The diet actually switches body and brain metabolism. Meals have to be calculated for each person, based on a specific number of calories each day. The person must eat every meal – no more, or no less, so it's not easy. It's much easier today though than when Charlie was on the diet, because now there are computer programmes that help to calculate the meal plans. Also, the foods available are much more attractive and much more palatable than when Charlie was on the diet.
There are a number of myths that the doctors use to dissuade people to try the diet. One is yes, it's difficult. But in response to that, I ask the question: "Where in medical school do they teach a course in deciding what is too difficult for any parent of a critically ill child to go through? Where do they teach that course? What is the name of the course that teaches a doctor to evaluate that?" So I don't think that's a particularly fair argument to make. It should be the doctor's job to explain what all the available alternatives are, and then in a process of joint, informed decision- making, come up with a solution appropriate for the family. I don't think it's really a doctor's job to decide for me what's too difficult for me to endure.
Another of the myths doctors use to talk parents out of diet therapy is there's no science in it. I find this incredibly insidious, because there is science today that talks about both the mechanisms and the efficacy of diet therapy. But if you say to a parent there's no science to diet therapy, you're sort of saying that there is science to the other stuff they do – and there isn't. There isn't a study in the world that talks about the interactions of the drugs, and no study that talks about the effect of drugs on children. You're not allowed to experiment with drugs on children, so how can there be science to it? That's a particularly dangerous double standard they use to talk people out of diet therapy and into the next drug.
The conclusion I can't help but draw – and nobody argues with me about this, is the ketogenic diet is not financially remunerative to doctors and to hospitals. In the United States, hospitals are businesses just like any other business, and they need to turn a profit. There are epilepsy treatments that are incredibly remunerative, and diet therapy is not, despite the fact that it's been scientifically proven and more than half the people with epilepsy who've tried diet therapy are improved.
Only a tiny fraction of people who deserve the diet are even told about it. In the United States, there are paediatricians who just don't know about it. More disturbing is that there are paediatric neurologists – people who specialise in treating neurological disorders in children – who either don't know or don't tell caregivers about this option. I don't think there's any question drug companies have an enormous influence, not just on a practising physician, but on the way they're taught. They help finance medical schools, so it's not mysterious how this situation has occurred – at least not to me.
I thought when we started The Charlie Foundation we'd be in business for a year or two, because it was so obvious. Why wouldn't you change your diet rather than cut your brain? It never occurred to me that years later, I'd still be on a soapbox trying to tell people this stuff. I thought, well, we'll just blow the whistle here, and there'll be a revolution. Of course, there has been no revolution. The people I work with and myself have downgraded our expectations now to one kid at a time.
We did a symposium in 2008 and now 2012. At the 2012 International Symposium there was great reason for optimism. In the medical portion, there were 450 doctors, scientists and dieticians from 30 different countries in attendance. It was really exciting. For once it wasn't like pushing a boulder uphill. Everybody wouldn't have gone to the trouble being there unless they had some sort of belief you can get better by changing what you eat.
As the diet is becoming more popular, they're using it with other neurological disorders too. There were speakers talking about the use of the same diet, the ketogenic diet, with Type 2 diabetes, early onset Alzheimer's, malignant brain tumours and motor neurone disease. They've found significant improvement with all these diseases, with this same ketogenic diet. So it's very hopeful now, that as this diet becomes a therapy for more disorders than just epilepsy, hospitals won't be able to get away with not having a ketogenic diet department with dieticians who specialise in it among their staff.
I think everybody walked out of the symposium having seen great progress and had great optimism about the future. Nonetheless, when you get back home and back to work, it still feels like you're pushing a boulder uphill again.
We have a sister organisation in London called Matthew's Friends created by a mum, Emma Williams, who started the diet, but too late for her son. He improved on the diet, but he was eight years old by the time she got him onto it. He's very impaired, but it did help his seizures go away. When a child has a seizure, they black out instantly and can fall and hit their head. I think he had damage from the seizures, the drugs and the falls. We did the symposium in 2008 and 2012 here, and she did the 2010 one in Scotland. She's going to do another one in 2014 in Liverpool in the UK.
At the symposiums, we have a fundraiser and a family day, which is also very well attended. Meryl Streep has been very helpful with promoting The Charlie Foundation and the diet. She came to the family day at the recent symposium, so we got some publicity, but not nearly enough. It still mysteriously doesn't get much publicity. I don't know the explanation.
In three weeks, I'm going to the Epilepsy Society meeting, where there will be 7000 professional attendees, and there will be one little satellite meeting about diet therapy. They're really depressing to go to. We'll have a booth and some people will come and talk to us, but there will be thousands of people there and no mention of diet therapy among the speakers.
Nonetheless, there is progress. In 1994, there was one hospital in the world with the ketogenic diet programme, and today there are 200, so a lot of kids have improved and gotten better, and now adults are also using the diet. There's a list of those hospitals on the Charlie Foundation website.
We do everything we can to get the word out. The large message though, is that the medical destiny of us and of our children is up to us. We have to embrace that and not be intimidated by it. I sleep much better knowing we have a website. There's a section there of 'keto-kids', who have benefited from the diet.
Charlie is 21 years old now. He's been cured. He hasn't had a seizure in 15 or 16 years. He's been off the diet since he was six or seven years old. He has been playing piano for 13 years, boxes twice a week, and is in his second year of college studying early childhood education. When he was sick, Nancy's first question to a new doctor was not about stopping the seizures, or even improving his health, but always: "Can he be happy?" He's certainly the happiest of our three kids and really proud of himself. He doesn't remember epilepsy and he barely remembers being on the diet. He's not quite sure what all the hoopla's about.
Charlie Abraham's presentation at the International Symposium on Diet Therapies, Phoenix Arizona, April 2008
"I want to thank you all for being here. My name is Charlie Abrahams. I used to have epilepsy. When I arrived at John's Hopkins just before Thanksgiving in 1993, I was 20 months old. I weighed about 16 pounds and was taking Dilantin, Felbatol, Tegretol and Tranxene several times every day. I still had a bandage on the back of my head from when they operated on my brain. I had been having dozens, sometimes as many as a hundred, seizures a day for a year. Then Doctor Friedman and Diana Tellis and Mrs Kelly changed what I ate. My seizures were gone in two days. I was off all those drugs in a month. I'm not sure what would have become of me if my family hadn't found the ketogenic diet, but I doubt that today I would be an A student in high school with lots of friends. I doubt I would have been playing piano for the last eight years and I doubt that I could hit an eight iron 160 yards. I even think I will soon reach a lifetime goal by being able to kick my older brother's butt.
I do admit that science is my hardest subject. A lot of it I just don't understand. So, it was fun to see my teacher's reaction when I told her I was going to miss a couple of days of school this week because I was addressing an international symposium on dietary therapies for epilepsy and other neurological disorders.
But I was one of the lucky ones. Since the diet was invented, there have been millions of kids just like me who were as sick as I was, but whose families had either never heard about the diet, or who were talked out of it.
So, when I say thank you for being here, I really mean it. Not just for me, but for all the kids and their families you are helping. Especially, I want to thank Mrs Kelly, the dietician at Johns Hopkins, who told my parents what I was supposed to eat. It was complicated, and knowing them as well as I do today, I'll bet that working with them was a real challenge for Mrs Kelly.
But Mrs Kelly patiently hand calculated every bite that went in my mouth for five years. The truly amazing thing is that Mrs Kelly had been doing the same thing for hundreds of children for over 40 years before I got there, and continued for several years after I left.
When you think about it, a big reason we're all here today is because of Mrs Kelly. And now, we can all say thank you. So I would like to present this award to Mrs Kelly, with gratitude and admiration for a lifetime of helping children with epilepsy."
CHAPTER 2
Elaine Bakos, 53 years
British Colombia, Canada
Fibromyalgia, with symptoms since childhood
I have always suffered from aching and pain. From about ten years old, my legs ached all the time. All we heard was, "Oh, it's growing pains." I never had any endurance – like when I tried track, I was told I was lazy. For as long as I can remember, I always had to push myself and needed a lot of sleep. I figured that's just the way I'm built.
When I was 17 years old, chronic fatigue wasn't really diagnosed. It was fatigue that you just couldn't get off the couch, you just survived – that's all. I'll never forget my GP who, when I first started seeing him for my thyroid, said: "Well, we don't want to diagnose you with chronic fatigue, because that's a dead end."
As an adult, it was: "Just cope with the fatigue and pain", until I had a crisis with it about five years ago, when it basically just took over my life. It wasn't that I was bedridden – I was still functioning, but the quality of my life was at the point where I felt: "Why am I even trying to live?" Even so, no one ever really diagnosed me with anything.
(Continues...)
Excerpted from Good News for People with Bad News by Nyema Hermiston. Copyright © 2016 Nyema Hermiston RN ND Adv Dip Hom.. Excerpted by permission of Balboa Press.
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