Dietary Therapy for Epilepsy: A Parent’s Experience

Foods That Heal

Using the Modified Atkins Diet for Seizures

By Jeanne Riether

 Most likely if you are reading this, you are either a parent of a child with epilepsy, or have a family member or friend with the condition. Perhaps you suffer from seizures yourself. Some people have milder forms of epilepsy and experience seizures only once or twice a year. Other epilepsy patients experience hundreds of seizures per day. In China, where I live, over 9 million people currently suffer from epilepsy. Thirty percent of patients experience seizures that cannot be controlled by medication.

Please understand, I am not a doctor. I can’t give you medical advice, and you will need to work with a qualified neurologist to find the right treatment. However, because the Modified Atkins Diet (MAD) is a newly introduced therapy in China, I hope that by sharing about our personal experience using it, other parents will find some of the answers they’re seeking.

My son’s epilepsy was successfully controlled using the diet, and our hopes are that others will find similar success. However, while MAD therapy worked for us, it is important to understand that it doesn’t necessarily work for every child exactly the same way. MAD is a medical therapy, not magic. Every child is different, and as much as we might wish it to be so, unfortunately there is no “magic cure” that works for everyone.

But information and knowledge is power, and knowing what options are out there will help you make wise decisions. In the midst of my son’s medical crisis I longed for clear information.  Unfortunately, when our children are seriously ill, we are so busy caring for them that we have little time to search for answers; we are left feeling desperate, vulnerable and frightened.

This story is an attempt to share what we learned in the hope that it will help others. Dietary therapy is available as a treatment option, and it may also work for your child.

What is Dietary Therapy for Epilepsy?

Thankfully most cases of epilepsy today can be controlled successfully with medication. However, not everyone is able to achieve full seizure control with medication, and dietary therapy offers particular hope to the estimated 30% of children whose seizures can’t be controlled well with drugs.  Interest is also growing in use of the diet as a first-line treatment for certain kinds of epilepsies, before medication is prescribed. This is how I chose to treat my son, using the diet as his first form of medical treatment.

The Modified Atkins Diet was developed at the renowned Johns Hopkins Hospital in the United States in 2002.* It is a variation of the traditional Ketogenic Diet which has been used as a treatment for epilepsy since the early 1920′s, but gradually fell into disuse after the development of  modern anti-seizure medication in the 1940′s and 1950′s. The quest to find answers for those who are not helped by medication eventually brought scientists back full-circle, and dietary therapy was once again explored as a modern treatment option. The results are promising: the outcome of a number of published clinical studies have now established MAD as an effective treatment for both children and adults with intractable seizures.**

 (* <http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/epilepsy/about_us/ketogenic_diet.html>)

 (** <http://www.hopkinsmedicine.org/news/media/releases/Modified_Atkins_Diet_Can_Cut_Epileptic_Seizures_in_Adults>)

The Modified Atkins Diet is an extremely high fat, low carbohydrate, moderate protein diet. There are certain cases when MAD therapy is not recommended or safe, such as when a child’s liver cannot handle a high fat diet, or in certain types of metabolic syndromes when the body cannot utilize fat. For that reason, the diet should not be attempted without a doctor’s direction. Children with poor impulse control or those who refuse to comply with a restricted way of eating would be poor candidates for the diet; sugary drinks and snacks are forbidden and it requires commitment to stick to the diet without fail.

However, if you feel you and your child can manage the diet, and your child is cleared by a doctor to start, you will find it is a fairly simple regimen to follow once you get used to it. I learned to make many delicious foods using ingredients my son was allowed to eat, substituting certain artificial sweeteners for sugar, and later learning to bake breads and cakes with nut flours instead of wheat.

Though we had to adjust to a new way of eating, and it took me time to learn how to cook this way, eventually it became second nature. The results are wonderful and it truly was worth any inconvenience or difficulty. Seeing him happy and healthy, medication free, and no longer having seizures, has been well worth the difficulty of learning how to plan his meals and cook them.

Jordan’s Story

My son Jordan is 14, and surprisingly I never realized he was having seizures for years before he was finally diagnosed. In fact, my knowledge of epilepsy was quite limited to what I had seen in movies, when a person falls down and has convulsions. That type of tonic clonic (grand mal) seizure is what comes to mind when most of us hear the word ‘epilepsy’.

Actually, there are over 40 different types of epilepsy. Each type presents its own unique symptoms and has a different treatment and prognosis. From talking to neurologists and piecing together what I’ve learned about epilepsy, I believe Jordan started having absence seizures when he was six. In that type of seizure the child goes “blank” and stares briefly into space for a few seconds, often blinking. The episode is very brief, and may go unnoticed.

Jordan occasionally seemed to become deeply lost in thought, like pausing a video for several seconds. It was an odd trait that I and others noticed, but he was a very intelligent, happy child and there were no other indications that something was amiss. It only occurred occasionally and we summed it up to absentmindedness. He appeared to be a very bright little boy with too many important thoughts racing through his head. It didn’t affect his life or studies, and we paid little notice.

In January 2009, however, the situation changed. Epileptic seizures often change pattern at the onset of adolescence due to hormonal fluctuations and Jordan was right on schedule. A few months before he turned 12 he fell down in what appeared to be a brief faint while out shopping. We wondered if he was overheated, overtired or dehydrated, but he recovered quickly and seemed fine.

 Then about a month later he fell again. It was the same scenario, falling and then quickly recovering. Six weeks later, it happened a third time. Each time he was only unconscious for seconds but it was obvious something wasn’t right.

 I had him checked medically several times, at different hospitals.  After various tests ruled out heart trouble, low blood pressure and anemia, the doctors suggested it might simply be childhood fainting spells, and he would probably eventually outgrow them. He was on the thin side, so we tried giving him high calorie snacks. He appeared to be healthy in all other ways, so we kept an eye on him and tried not to worry.

 In August, however, the pattern picked up and he began falling daily. It was obvious this was more than fainting. We made a number of trips to pediatricians for a series of tests. I had no idea what was causing the problem and anxiously awaited test results.

Finally, at the end of August, after receiving the results of EEG and CT scans, the doctor presented the diagnosis: epilepsy. I was stunned.

 It was the first time I’d ever heard of atonic seizures, the type that causes the child to suddenly lose muscle control and fall, without warning. Jordan had an atonic seizure right at the hospital when we were about to do the EEG, which fortunately helped the pattern to show up on the tests. The pediatrician explained that atonic seizures can sometimes be particularly difficult to control, and recommended that we see a neurologist specializing in epilepsy.

Searching for Treatment Options

I had long discussions with several neurologists in order to gather as much information as possible about Jordan’s condition. That was the first time I recognized the link between Jordan’s previous staring episodes and the falls he was experiencing now. Both were seizures, though different types; his absence seizures had apparently escalated into atonic seizures. Absence seizures sometimes disappear when a child reaches adolescence, however they sometimes increase in frequency or change pattern when a child hits a growth spurt.

Hearing a diagnosis of epilepsy for your child is tough. I knew nothing about the disorder, so the learning curve became very steep. I struggled to become familiar with strange new medical vocabulary. I battled guilt, wondering why I hadn’t recognized his condition earlier. Had we done something to cause this, or neglected his care?

 I eventually found out most parents of children with epilepsy are hit with similar overwhelming feelings. The truth is that preventing our children from ever experiencing seizures is simply beyond our control. We may be powerless to prevent seizures, but we can still help our children face the challenge of epilepsy with courage and hope.  We can learn about the best treatment options available, and make wise and informed choices.

I combed the internet, searching every web site I could find for information about epilepsy from reliable medical institutions.  It was during one such late-night foray on the web that I visited Johns Hopkins’ Hospital site.

Johns Hopkins is widely regarded as one of the best hospitals in the world, and has been ranked as the leading hospital in the United States for the last 20 consecutive years. Their department of neurology is world-famous for offering state-of-the-art care. It was here that I first read about the Modified Atkins Diet for seizures.

I was astounded that diet alone was actually considered a viable treatment option; like any parent, I was concerned about the side effects of anti-seizure medication. I read about children whose seizures were successfully controlled while using the diet and that the side effects of MAD therapy were minimal. I decided to discuss it with our neurologist at our next appointment.

While I am certain the physicians treating my son had his best interests at heart, initially they were less than supportive about my idea to try MAD. They were somewhat familiar with the traditional Ketogenic Diet: they knew that it was a very rigorous diet, and that no hospitals in our part of the country offered it as a treatment. They did not have any information in Chinese about the Modified Atkins Diet for seizures; it may have been well-known abroad, but it was totally new to China. Naturally, they had reservations, and advised me to work with treatments they knew well.

 I know that Jordan’s physicians are capable and dedicated professionals. They simply could not promote the use of an unfamiliar treatment, and it was their responsibility to voice their reservations. They raised three main objections:

 a) Embarking on the diet might entail an extremely difficult and complicated regimen,

b) Diet therapy is usually implemented when anti-seizure medications fail, and

c) It appeared to them that I was choosing an “old-fashioned” therapy over modern drugs.

 I explained that the facts I was uncovering in reading about clinical studies done on MAD painted a different picture.

It is true that traditional Ketogenic Diet therapy, which has been used to treat epilepsy since the 1920′s, is somewhat complex and time-consuming to learn. Yet, thousands of parents worldwide use it daily to help their children with intractable seizures. The Ketogenic Diet, however, cannot be attempted at home without direction from a trained dietician and physician. The child must first be admitted to a hospital for a period of fasting, and the parents must be trained to weigh, measure and prepare foods. Calories are restricted and foods are calculated in exact amounts.

The Modified Atkins version is considerably less complicated. Patients do not need to be admitted to the hospital to begin MAD therapy, no fasting is required, and they do not need a dietician to plan meals. Measurements of foods are estimated, and patients can stick to the diet fairly easily when eating at restaurants or gatherings. Patients following the diet can enjoy many of the same foods their families eat together at home.

Traditional Ketogenic therapy is recommended for infants, patients who cannot eat solid food, or those who require a more rigorous treatment due to difficulties achieving seizure control. MAD is a somewhat more “user friendly” version of the diet that is recommended for older children, teenagers and adults. It is simpler to follow, less limiting socially, and more palatable.

It is also true that diet therapy is more commonly attempted in treating children who are not helped by anti-seizure medication. Most people try medication before trying diet therapy. But studies are now in progress on the growing use of Modified Atkins diet as a first line therapy for new on-set seizures in both children and adults. * Though it may not yet be a common choice for first line treatment, MAD is certainly not a “poor relation” in the family of therapy choices, only to be called upon when all else fails. Clinical research has elevated MAD to its proper place as a modern treatment option; when effective it leads to rapid seizure improvement with minimal side-effects.( * <http://www.aan.com/news/?event=read&article_id=2621>)

Sudden Change in Seizure Pattern

 I was reluctant to start the diet without our doctors’ approval. Then, while considering what to do,   from one day to the next, Jordan’s seizure pattern suddenly went wild. He started experiencing clusters of partial seizures (hallucinations and disorientation) and tonic clonic seizures (grandma convulsions), along with the daily atonic seizures he was already enduring.

It was a heartbreaking and frightening experience for all of us. Jordan was experiencing multiple seizures daily, and it usually took him hours to recover from each one. He hit his head hard several times when he fell, so he had to start wearing a helmet for protection. The seizures increased to such a point that a wheelchair became necessary for trips outside.

We found ourselves in the middle of a medical crisis. My happy, bubbly, young son’s life quickly became a nightmare. During adolescence, when we are most susceptible to peer-pressure and worrying about how others perceive us, he found himself helmeted in a wheelchair, or convulsing on the floor. I knew he was dealing not only with the sudden onset of seizures but the emotional issues that accompany them.

Sometimes the biggest challenge of epilepsy can be managing our emotional response to it. To experience even one seizure can be frightening and destabilizing. A quote I read by epilepsy educator Dr. Robert Mittan summed it up: “Seizures last several minutes or less. Worry about the next seizure can last a lifetime.”

But challenges can mold the human spirit in remarkable ways in much the same way a lump of coal is transformed into a diamond when exposed to extreme pressure. As Jordan faced his worst nightmare, a curious process took place. Facing his fears and learning to could cope with them turned into an empowering experience. 

Talking openly and frankly together helped a lot. He received support and encouragement from his friends and family, which helped so much. He even began to be able to make jokes about waking up and finding himself yet again on the floor, the center of attention. The day I saw him teasingly try to run his older brother down with his wheelchair, my spirits lifted: Jordan was going to make it through this. I believe he is one of the bravest young men I have ever known, and I greatly admire his spirit of resilience.

Learning to Use the Modified Atkins Diet

Despite the reluctance of the doctors overseeing Jordan, I decided I wanted to try the diet first before medicating him. I reasoned that if the diet didn’t work we could try the medication afterwards, but if the diet did work then we would avoid the side effects of the medication. The neurologist agreed to respect my decision and offered to supervise my son as a patient if I ran into problems. I was very thankful for that support as we pursued what was considered an unusual treatment plan.

 Jordan’s blood was tested at the beginning of the diet to check his cholesterol and basic metabolic function. All the tests were normal, so, very nervously and feeling like I wasn’t sure at all about what I was doing, I started him on the Modified Atkins diet following the protocol I had read about in the clinical studies, at the end of September.

Most of the limited carbohydrates on the diet come from vegetables and small amounts of fruit, and cannot total more than 10 grams of net carbohydrates per day in the beginning phase. In terms of food, that equals approximately several cups of salad, a cup or so of cooked vegetables, and possibly a tiny portion of berries. Sugar, rice, noodles, potatoes and bread were not allowed. It was quite a change for my son who loved rice more than any other food.

Fat is a key ingredient on the diet – lots of it! For some unexplained reason fat helps to heal the brain; without it, the diet doesn’t work. I cooked Jordan’s foods in butter and oil, used vegetable oil sauces on meats and salads, and fed him high-fat cheese, heavy whipping cream and fatty meats. I served roast chicken, lamb soup, bacon and other high-fat proteins. We eventually found foods that he liked, and he became quite happy with the meals he was served.

It actually took me a few days of failed attempts before I grasped how to go about preparing foods properly on the MAD program. There was no one in China to teach me and I longed for some clear direction. One of my motivations for preparing instructional material about cooking with the MAD diet is to save other parents from what we initially experienced.

In the beginning it seemed as if it took me forever to cook his meals; I had to look up and calculate each gram of carbohydrate for each food I served. (I’ve since gotten the hang of it, have memorized most of the net carbohydrate content of foods, and can prepare and serve a great meal for him in minutes). I finally printed a list of the net carbohydrate values of common foods and taped it to the fridge door, to use when planning meals.

 Then, soon after starting, we had a set-back – a friend innocently gave Jordan a treat of dried seaweed snack coated with sugar. In a few bites he exceeded his entire carbohydrate count for the day! I was so frustrated after spending several days learning how to prepare low carbohydrate meals; to have it all undone in seconds with just one treat was very discouraging.

That night I emphasized to my son clearly what he could and couldn’t eat and got a firm commitment from him not to have any more slip-ups. I couldn’t do this without his total cooperation and we needed to work as a team. 

Success and Seizure Freedom

The following day we began the program in earnest and had no slip-ups this time. As was to be expected, there wasn’t any noticeable change in his seizures by the end of the day of doing it properly. I had read about certain cases when children showed dramatic improvement after just a few days on the diet but I didn’t want to get my hopes up.

I knew it could take weeks, or even months, before there was any progress in seizure control. I also knew that the diet simply didn’t work at all for some children, just as medication doesn’t help in certain cases. As much as I wanted it to work for my son, I vowed not to get discouraged if our progress turned out to be slow.

 On the second day of doing it right, however, I wondered if I was imagining things…it seemed Jordan’s seizures were shorter in duration, and milder. Every parent hopes for a miracle, but I wanted to remain cautious in my reaction. I had read the clinical studies: seizure frequency in patients following the MAD diet is reduced by more than half in 43% of patients. Over 27% of patients have seizure activity reduced by more than 90%.* Some very fortunate patients become seizure free. I wanted to see what the diet could do for my son but I hoped what I was seeing wasn’t just a mother’s wishful thinking. *(Kossoff EH, Zupec-Kania BA, Rho JM. Ketogenic diets: an update for child neurologists. J Child Neurol. 2009 Aug;24(8):979-88.)

Day three came, and again I noticed an improvement: Jordan had only the mildest of seizures that day. I realized it wasn’t just me imagining things. He was definitely doing better.

Then, after three days on the diet, Jordan’s seizures simply stopped.

It was an amazing thing, and I still feel like crying when I think about it. We all wondered if it was going to last, but were thankful even for just one seizure-free day.

But it did last. It was beautiful to watch his mind and spirit becoming clear again after such a turbulent time. We eventually retired the wheelchair and helmet for good and haven’t looked back.

Jordan runs, jumps, plays, laughs and leads a normal life.  He recently took up fencing as a sport. He will be on the diet for at least two years or more, and then we can see if he can retain seizure control by weaning him gradually into normal eating.

The Search for Solutions

 I realize that not every person who uses the diet will see such dramatic and immediate results. In the world of epilepsy, Jordan’s rapid success was the equivalent of winning the lottery. I have since heard from other parents who patiently kept their children on the diet for many months before seeing any improvement whatsoever. I admire their tenacity and courage. Those who persisted without immediate results learned to tweak and personalize the diet to suit their child. Many found ways to eliminate certain foods or additives that they discovered lowered their child’s seizure threshold.  Many went on to achieve success, reporting that their children experienced improved cognition and fewer seizures. Some went on to achieve complete seizure control.

Then there is the smaller group of children, about 30%, who unfortunately don’t experience any improvement when following the diet. After giving it sufficient time and tweaking the diet to see if certain variations will help their child, when it becomes obvious it is not working, they must discontinue MAD. Perhaps I admire those parents the most, for I know how fragile hope can be.

 My desire is that Jordan’s story will encourage those of you who are seeking answers for your child to keep searching until you find them. Whether or not diet therapy proves successful in your case, don’t ever give up hope for your special, precious child. Every child is different, and I believe in the deepest part of my heart that when things don’t go the way we hope and plan, that somehow a better plan is unfolding for a higher purpose.

Jordan has not had any major problems with epilepsy since late September 2009. He has had several fainting incidents when he caught the flu in ensuing months, and later fainted again when he became overly tired and hungry. We have no way of knowing if those episodes were actual breakthrough atonic seizures, ordinary flu symptoms, or just a bad day. Whatever they were, it was nothing like his previous condition.

Jordan has not had another partial, tonic clonic, or absence seizure since starting the diet. Even if the occasional fainting incidents were breakthrough seizures – and his neurologist is not sure that they are – he would still be classified as 99% seizure free. The change in him has been quite dramatic. Any setbacks we experience are a reminder to rejoice in his progress, and to stay vigilant with his diet.

We are enormously grateful to Dr. Eric Kossoff, Medical Director of the Ketogenic Diet Program at Johns Hopkins Hospital, for his dedication and interest in helping children worldwide through dietary therapy. Jordan’s success in using the Modified Atkins Diet was a motivating factor that led to the development of the Healing Young Hearts Epilepsy Awareness program. We are grateful for Dr. Kossoff’s kind help in reviewing the Healing Young Hearts power-point outlining the basics of the Modified Atkins Diet, which is available for free download at healingyounghearts.org.

As a mother, I often feel the answer to Jordan’s epilepsy was a miracle in our lives. My greatest wish is that other children will have the chance to experience that same miracle for themselves.

5 Responses to Dietary Therapy for Epilepsy: A Parent’s Experience

  1. Marilyn Dixon 1909 Oakview Dr. says:

    Jeanne,

    Thank you so much for writing this article on your son’s success with the MAD diet. It was heartwarming and so encouraging. It gave me, a mom who has been trying this diet with her daughter for 3 months now, renewed hope as well as some good tips. I wish, had known about this diet 25 years ago when my daughter developed epilepsy following her DPT shot as an infant. Perhaps, I would have tried the dietary route first and not have had to see my daughter suffer with so many years of terrible drug side affects along with the seizures. I can’t go back, but I can go forward. Even though she is on 3 drugs and had seizures for so many years, I have seen improvement in the frequency and intensity of her seizures since starting the diet. We have been able to lower one of her drugs by one pill and also lower the intensity and frequency of her VNS. I’m thinking it’s time to lower her meds again, but may have trouble convincing her doctor, but we’ll see. I am still on a learning curve. My daughter has multiple allergies and gut issues so we are actually combining 3 diets in one—the SCD diet for her gut, the low glycemic so veggies don’t go to sugar too fast and the MAD diet for the fats. Due to her allergies, the only added fats she can tolerate right now are olive oil and clarified butter, so I’m going to cook her more of that roasted chicken and lamb and other fatty meats like you mentioned. I also recently switched from honey as a sweetener for her water (won’t drink it unless it’s sweet and can’t tolerate any other beverages) to Saccharin so I could lower her carbs even more. So really you could say we are just now fully implementing the diet correctly (I think). I love the MAD yahoo group as I learn new things every day to help. God bless, and thank you again for sharing your story about Jordan.

  2. mark tobin says:

    my son is now 22 his epilepsey has been uncontrolled for eight years i would do anything to get him cured would it work for him

    • admin says:

      Dear Mark,

      It certainly would be worth speaking to your neurologist about the possibility of starting your son on the diet. If your neurologist does not know much about it, you can either give him information (such as the article published by Dr. Kossoff on this site) or find another neurologist who is more familiar with current research in ketogenic diet therapy. The Modified Atkins diet has helped many people with intractable seizures and is often the standard recommended therapy when patients fail several anti-seizure medications. If you want to find out more about the day-to-day use of the diet you could consider applying to join the yahoo group Atkins for Seizures. On their forums and message boards you will find many postings by parents who have used the diet for years and they help newcomers learn how to cook with it and tweak it if necessary. It is a very supportive web community with nice people. I wish you all the best on your journey to find answers for your son.

      Jeanne Riether

    • Nyanna says:

      What a joy to find someone else who tikhns this way.

  3. Sarah says:

    How great to read your story. Our son has been 99% seizure free now for 13 months since being on the ketogenic diet – thank you for spreading the word.

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