Keto Modifications For Children With Epilepsy
As we mentioned above, children have different metabolic needs than adults do, and may need dietary modification in order to get their energy needs met, depending on their age and stage of development. Its important to work with a doctor or dietician when trying keto as a therapeutic intervention for your child.
Where Can I Find Out More Information About The Diet
- Epilepsy.com’s Keto News includes summaries of cutting edge research and helpful hints for people with epilepsy, parents, and caregivers who receive or provide diets for the treatment of epilepsy.
- One book available is, “The Ketogenic Diet: A Treatment for Children and Others with Epilepsy,” by Dr. Kossoff and his team, which discusses the Johns Hopkins approach and experience.
- Watch Dr. Eric Kossoff in “The Promise and Challenge of Dietary Therapy for Epilepsy” at the George Washington University Epilepsy Grand Rounds on March 8, 2016.
- In an interview for CNN en EspaÃ±ol, Dr. Joseph Sirven explains the basics of the ketogenic diet. Find more information in Spanish about epilepsy here.Description of the Ketogenic Diet in Spanish / DescripciÃ³n de la Dieta KetogÃ©nica en EspaÃ±ol
Proceedings Of The Ketogenic Diet Therapies Symposium March 26
This 2-day professionals meeting was sponsored by The Charlie Foundation for Ketogenic Therapies, The Epilepsy Foundation of Greater Los Angeles and the national Epilepsy Foundation. Nutritionists, nurses, and physicians from seven southern California medical centers, plus guest speakers, assembled to share clinical pearls on applications of ketogenic therapies. Access the white paper here.
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How Is The Patient Monitored Over Time
- A dietitian should keep track of weight and height periodically, as well as calorie intake in case there is a problem. We recommend dietitian involvement either from the beginning or after 3 months if the diet seems to be working to help keep the patient on it.
- Drs. Kossoff and Cervenka recommend blood and urine monitoring every 3 months, and checking urine ketones once or twice a week while on the diet.
The Charlie Foundation And A Return To Keto
In 1993, a young boy named Charlie struggled with severe epilepsy. He was on several different daily medications. His parents were willing to try anything and read about the ketogenic diet as a therapy for epilepsy. They gave it a try and it worked for Charlie. Within a month, he was off medications and seizure-free. He remained seizure-free on keto for five years and has not had another seizure since.
The Charlie Foundation for Ketogenic Therapies was founded in 1994. It provides information about diet therapies for people with epilepsy, other neurological disorders, and select cancers. It also explains that anecdotally, and by four randomized controlled studies, the keto diet reduced seizures by at least 50 percent in half of the people who trialed it, and 15 to 25 percent are cured of seizures.
Since the formation of The Charlie Foundation, keto has remained an adjunct therapy for epilepsy, and there are several clinical trialsstudying keto for epilepsy, both completed and underway, including:
- Efficacy and Safety of Ketogenic Diet as Adjunctive Treatment in Adults With Refractory Epilepsy
- Effect of Outpatient Classic Ketogenic Diet in Epileptic Children and Adolescent
- RCT of the Efficacy of the Ketogenic Diet in the Treatment of Epilepsy
- Ketogenic Diet vs. Antiepileptic Drug Treatment in Drug-Resistant Epilepsy
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How Is It Different From The Ketogenic Diet
Although the foods are very similar, there are key differences between the modified Atkins diet and the ketogenic diet.
- First, with the modified Atkins diet, there is no fluid or calorie restriction or limitation.
- Although fats are strongly encouraged, they are not weighed and measured. Most patients will consume plenty of dairy and oils.
- One of the biggest differences is that there are no restrictions on proteins. Typically 35% of calories for a patient on the MAD come from protein.
- Foods are not weighed and measured, but carbohydrate counts are monitored by patients and/or parents.
- It is started outside of the hospital and the person does not need to fast before starting the diet.
- Lastly, foods can be eaten more freely in restaurants and outside the home, and families can do it as well.
The diet is a “modified” Atkins diet as it allows for less carbohydrates than the traditional Atkins diet and more strongly encourages fat intake. Please remember that no diet should be tried without a neurologist involved.
When Your Child Has Started The Ketogenic Diet
Once your child has started the ketogenic diet, the dietitian will be in touch with you regularly by phone or email to discuss how the diet is going, as well as to monitor your childs weight and blood ketone levels. They may advise changes to the diet during this time.
The ketogenic team will follow you up after three months of starting the diet to check whether the diet is still the most appropriate treatment option.
The ketogenic team will ask you to keep a ketone and seizure diary to help best manage and adjust your childs diet.
It is important to follow the diet as the dietitian has advised, and to weigh and measure foods carefully. If you have any problems following recipes, or have concerns about side effects, you should discuss these with your dietitian before making any changes.
The diet may be weaned after approximately two years to evaluate the benefits of the diet and whether or not to continue with the diet.
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How Is A Persons Health Monitored
Regular follow-ups with the dietitian, and medical team, will monitor your or your childs growth , health, their epilepsy, and if there is a need for any change to their anti-epileptic drugs , such as changing to sugar-free versions. If the diet is followed carefully, individuals do not put on weight, or lose weight inappropriately.
You may be given a diary to record the number and type of seizures you or your child has while on the diet. As food can affect how we feel or act, you may be asked to note any changes in your or your childs mood, alertness and overall behaviour. It usually takes at least three months to see whether the diet is effective. The length of time the diet is followed may vary, but if an individual remains seizure-free, has fewer seizures, or maintains other benefits, such as improved quality of life, they may consider , slowly coming off the diet after two years.
What Is The Future Of The Modified Atkins Diet
Lots of studies continue to occur, several evaluating this newer diet in comparison to the classic ketogenic diet. Other studies underway include:
- Improving efficacy and safety in adults
- Expanding usage in developing countries
- Adding supplements to improve efficacy
- Using MAD for milder epilepsies not often treated with the ketogenic diet
- Using MAD for conditions other than epilepsy .
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What Is The Keto Diet
The keto diet is a diet which is high in fat and low in protein and carbohydrates. In a normal diet most of your energy comes from carbohydrates . These foods get turned into sugar and are used by the cells in your body. However, if your body does not receive much carbohydrates it can use fat for energy instead. This is a state called ketosis.
The aim of a keto diet is to encourage your body to reach ketosis. To do so, most of the food in your diet needs to consist of fatty foods like butter, cream, oils, avocado and cheese.
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Health Conditions That May Benefit From A Ketogenic Diet
Ketogenic diets have become incredibly popular.
Early research suggests this high-fat, very low-carb diet may benefit several health conditions.
Although some of the evidence is from case studies and animal research, results from human controlled studies are also promising.
Here are 15 health conditions that may benefit from a ketogenic diet.
How To Sustain A Keto Diet
A few types of keto diets have been designed, which cater to different lifestyles. Ilana Nurko, MS, RD, LDN, CNSC, advanced dietitian at Northwestern Memorial Hospital, explains that patients begin the Keto Program at Northwestern Medicine with an educational class about the keto diet to build an understanding of its benefits. Then, they meet individually with clinical staff to establish a customized plan that meets specific goals and helps them achieve success.
Effective keto regimens can be modified to help patients stick to the diet. Although it may be tempting to cook repetitive meals or purchase processed items marketed as keto, it also is vital for long-term health to include a variety of whole foods in your diet.
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What Foods Can Your Child Eat
Your child’s diet will have a lot of fat. To put it in perspective, in a healthy diet for kids, about 25% to 40% of calories come from fat. In the ketogenic diet, about 80% to 90% of calories come from fat.
So your child’s meals are loaded with fats while portions of protein and especially carbs are small. In the typical ketogenic diet, kids get three to four times as much fat at each meal compared to carbs and protein combined.
What does that mean in practice? Most high-carb foods — like bread, pasta, sweets, and more — are off the menu. Your doctor will usually start with this first…but there are also modifications. If it works, you can usually step down to more of a modified atkins and slow introduce carbs. This usually involves carb counting and monitoring ratio of carbs to fats.
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Starting The Ketogenic Diet
This high-fat/low-carb diet may sound like any number of protein diets you’ve read about. In fact, some popular protein diets also claim to cause the process of ketosis. But the ketogenic diet is not like a typical protein diet and you can’t do it on your own.
“It’s very important that a family have a doctor and a dietician working with them on this diet,” says Solomon L. Moshe, MD, director of Clinical Neurophysiology and Child Neurology at the Albert Einstein College of Medicine in New York. “Otherwise, it won’t work and it isn’t even safe.”
A dietitian can also help you adapt the strict rules of the diet to real menus, so you can come up with meals your child may enjoy.
If you’re considering the ketogenic diet, don’t assume your child will fight the strict rules. Talk it over together and include your neurologist. Your child probably wants the seizures to stop, too, and may cooperate willingly.
Definition And Diet Composition
The MAD aims to provide increased flexibility and palatability, with a 1:1 ratio of fat to carbohydrates and protein, and contains around 65% fat, 25% protein, and 10% carbohydrate . Fat is encouraged and the carbohydrate intake is limited to 1020 g/day in children and 1520 g/day in adults . Because of carbohydrate restriction, the MAD can also produce urinary ketones . The MAD does not require weighing food on a gram scale, or restriction of calories, protein or liquids, and may be a good option for patients who are unable to tolerate a more restrictive diet such as the classical ketogenic diet . Low-carbohydrate multivitamin and calcium carbonate supplementation is recommended in the MAD .
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Problems With The Keto Diet
Doctors may recommend the keto diet for seizures which canât be controlled with medication, but it does have some drawbacks:
- Many people find it unpleasant to eat such a fatty diet
- It can cause other health issues such as constipation, kidney stones and high cholesterol levels in the blood
- It could lead to bone fractures and slowed growth
- It is inflexible. You must follow the diet very strictly. For example, you cannot occasionally eat a single cookie or some other carbohydrate because this could immediately take you out of ketosis
Efficacy In Adolescents And Adults
The efficacy of the MAD is also proven for the treatment of drug-resistant epilepsy in adults and adolescents. In this patient group, carbohydrate intake is generally around 1520 g/day and the rates of seizure reduction and adherence are lower compared to those of the child population .
In a recent meta-analysis, eight studies were identified that used the MAD in adult patients with refractory epilepsy, aged between 15 and 86 years, with treatment times ranging from 3 to 36 months. In these studies, the proportion of patients who showed > 50% seizure reduction ranged from 20 to 70% and the rate of seizure freedom ranged from 7 to 30%. The rate of abandonment of the diet varied between 12.5 and 82% of the patients .
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Is This A Healthy Way To Eat
To make sure the diet is nutritionally balanced, an experienced dietitian works out exactly how much of which foods the person can eat each day. To help with this, people have individual recipes, are given support on how to plan meals, and are guided on which foods should be avoided. As the diet can be quite restrictive, the dietitian will recommend any vitamin and mineral supplements that are needed.
Preparing For Your Appointment
If you are from outside the Baltimore/Washington area, your your local neurologist will continue to be your primary neurologist and handle your seizure medications. We will need all your medical records in advance so we can review them and ensure the modified Atkins diet or ketogenic diet is appropriate for you. International patients should request appointments through the Johns Hopkins International Office.
We will also request lab work in advance as well to check your kidney function and cholesterol. If the diet is appropriate, we will then check your insurance and schedule you for a one-hour clinic visit with one of our epileptologists, either Dr. Cervenka or Dr. McDonald.
We will ask you to keep a three-day record of all of the foods you eat before coming to see us in clinic.
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Treatment Process: Ketogenic Diet For Epilepsy
When a child is to go on a ketogenic diet for their epilepsy symptoms, it typically begins with a fast followed by the start of the diet in the hospital. This allows the medical staff to ensure there is no increase in seizures when starting the diet, educate family members on the diet, and to make sure all medications being used are free of carbohydrates.
A ketogenic diet formula may also be used for infants and children being fed through a gastrostomy-tube.
Although fasting is not necessary for getting into ketosis, it does speed up the process and is often used for this reason.
Although patients still take seizure medications while following the ketogenic diet, some patients have been able to take smaller doses after implementing the diet. However, this can be risky in children since its so easy to get kicked out of ketosis, even with one meal. It might even be difficult for parents to constantly monitor everything their children are eating throughout the day.
The Drawbacks Of The Ketogenic Diet
There are many difficulties following the ketogenic diet:
- Weighing food precisely is important.
- Even little lapses — like sneaking the crumbs of a cookie or swallowing a nasal decongestant — can result in a seizure.
“You even have to measure the carbohydrates that are in your toothpaste,” says William R. Turk, MD, Chief of the Neurology Division at the Nemours Children’s Clinic in Jacksonville, Florida.
As you might imagine, it’s a challenge for most parents to keep their children on this diet. Children may accept foods from other kids at school, or over at a friend’s house. Older children may already have strong opinions about what they want to eat. The ketogenic diet works best in young children who haven’t yet developed strong tastes in food.
Children on the ketogenic diet also often feel very hungry, at least at first. You need to monitor all of the food in the house, including food in the dog’s bowl.
You may also be concerned about the effects of eating all that butter and cream. After all, isn’t fat supposed to be bad for you? A recent study confirmed that children on the ketogenic diet do have significantly higher levels of cholesterol than most kids. But damage from a high-fat diet generally comes only after many years. Children usually follow the ketogenic diet for just a few years.
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