Ketogenic Diet at Children’s Mercy2014

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At Children’s Mercy Kansas City, one of the seizure therapies that we

administer is the ketogenic diet. This successful diet therapy is a major

lifestyle change requiring a family commitment. Our team approach

is the key to successful implementation of the diet. Your family will be

supported by our ketogenic diet team throughout each step of the

ketogenic diet process.

Our Rationale

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The Facts

About one-third of patients with refractory epilepsy will not have

controlled seizures with three or more antiepileptic medications,

and thus may be potential candidates for the ketogenic diet.

There are also some genetic conditions in which the ketogenic diet

has high efficacy.

We do not fully understand how the ketogenic diet works to control

seizures, but different mechanisms suggest it balances the brain’s

chemicals resulting in a decrease in seizures.

This treatment has been in use since 1921, and continues to be

successful. At least 50 percent of patients placed on the ketogenic

diet have at least a 50 percent decrease in seizure frequency.

Studies also show that parents report an improved quality of life

after patients are placed on the ketogenic diet.

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Focus on a Successful Start

Meal plans combine 80 percent of calories from fat (often in the form of

cream, avocado, butter, eggs or mayonnaise), small amounts of fruits

or vegetables (carbohydrates), meat, fish or chicken (protein), and no

sugar. Foods are weighed on a grams scale to ensure accuracy.

Starting the ketogenic diet can be overwhelming, but here are some helpful tips:

Follow a Routine: Regularly schedule meals and snacks for your child.

Fluids:Ensure that your child consumes an appropriate amount of fluid, particularly water, daily.

Feeding Skills:Concerns with your child’s ability to eat, drink or swallow have to be

addressed prior to the diet initation.

Try the Following at Home: • High-fat foods: butter, oil, mayonnaise, coconut oil and avocado.

• Heavy whipping cream to drink, (may be diluted with water and sweetened with liquid Stevia).

• Full-fat products such as sour cream, cream cheese and dark meats.

• If your child currently consumes s ugary drinks, try sugar-free drinks such as Crystal Light.

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Sample Menu

BreakfastScrambled eggs with butter

Bacon

Small amount of fruit

Diluted heavy cream as beverage

LunchSpaghetti squash with butter or oil and a sprinkling of parmesan cheese

Lettuce leaf with mayonnaise as dressing

Orange diet soda mixed with whipped cream

DinnerHot dog slices with sugar-free ketchup mixed with a small amount of oil

Green beans with butter

Chopped lettuce with mayonnaise as dressing

Diluted heavy cream as beverage

These examples do not show the exact amounts of each food because

those will be tailored for each child by a dietitian.

Each portion of food must be prepared very carefully by using a gram

scale to weigh items.

Sneaking food or taking anything containing carbohydrates, including

medicines and toothpaste, can alter the diet’s effects and

cause a seizure.

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Ketogenic Diet Initiation

1. The initiation of the ketogenic diet requires a three- to five-day

hospital stay.

2. Once admitted to the hospital, your child’s diet will be slowly transitioned

up to a goal diet ratio of 3:1.

3. The diet is calculated in a ratio of fat to protein and carbohydrate

combined. The ratio typically ranges from 3:1 to 4:1. All foods are

measured on a gram scale per your child’s specific meal plan.

Caregivers/parents use a gram scale to get food amounts exactly right.

4. During initiation, all of your child’s medications and supplements will

be changed to tablet form.

5. Blood tests and urine tests are checked daily as your child is slowly

weaned into a state of ketosis.

6. This time is also useful for comprehensive parent and

caregiver education.

Our Team:Your family will be supported by our team through every step of the

ketogenic diet process. Our team includes a physician, nurse practitioner,

staff nurses, social workers, dietitians and a chef educator.staff nurses, social workers, dietitians and a chef educator.

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What to Expect

What are the chances that the ketogenic diet will be successful for my child?

Often, there is a period of fine adjustment needed before it is clear whether

or not a child is going to respond to the ketogenic diet. Doctors often ask

parents to try the diet for at least three months, before deciding whether the

diet is or is not working.

A child on the diet usually continues taking anti-seizure medicines, but may

be able to take less of them if seizures decrease after starting the diet. If a

child does very well, the doctor may slowly taper the medication with the

goal of discontinuing it altogether.

About one-third of children who try the ketogenic diet become seizure free,

or almost seizure free. More than half of the children who try the ketogenic

diet will see a greater than 50 percent reduction in seizures. Occasionally,

some patients must discontinue the diet due to side effects. A big benefit

of the diet is that many parents say their children are more alert and make

more progress when on the diet, even if seizures continue.

If the diet seems to be helping, doctors will usually prescribe it for long term. Then, they may suggest that parents slowly begin including

regular food in the child’s diet to see if the seizures can still be controlled,

even with a normal diet. The dietitian helps with this process of weaning

back to a normal diet.

Sometimes a small amount of seizure medication is started again after the

diet is stopped. However, some children may be able to stay seizure free

without any further treatment.

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Success Story

“Only a few days after leaving the hospital Santi began to laugh again! It

has been over a year since his last seizure and he is currently off all of his

seizure medication and is only on the ketogenic diet. It has been a very,

very long road and I never thought I would see the light again. We had

some disappointments, and some very dark moments, but I can honestly

say that I would not have done it any other way. The joy Santi brings makes

it well worth it. He’s proven many people wrong, and I cannot wait until his

neurologists see him walking at his next appointment.”

- Bertha Guillén

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Let’s Do This!

Ketogenic Diet Admission Information

Prior To Admission

• Contact your insurance provider to check on coverage of ketogenic diet admission and/or ketogenic formula coverage if formula is needed for your child.

• Contact the Epilepsy Clinic with any questions or concerns prior to admission.

• Buy a digital gram scale (can be found at Wal-Mart, Bed Bath and Beyond, Target, etc.). Accurate to the nearest gram, capacity up to 7 pounds.

Who will my child see?

Epileptologist: __________________________________________________

Epilepsy APRN: _________________________________________________

Ketogenic Dietitian: ______________________________________________

Ketogenic Diet Chef Educator: _____________________________________

Epilepsy Nurse: _________________________________________________

Epilepsy Coordinator: ____________________________________________

Social Worker: __________________________________________________

The Day of Admission

• Feed your child a regular breakfast and drinks.

• Call the Admissions office (913-696-8000) at 8 a.m. to confirm

bed availability and time. Our preference is that you are here

between 9 - 10 a.m.

• Check in at the Admissions Desk upon arrival to Children’s Mercy South.

Children’s Mercy South is located at:

5808 West 110th Street Overland Park, Kansas 66211

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Let’s Do This! (continued)

For the Admission

• Bring activities and toys from home for your child during admission. You may also bring activities, books and movies for parents or guardians.

• Bring food for parents or guardians. A cafeteria is available at Children’s Mercy South.

• Refrigerators in each patient room are available for use.

• Visiting Hours are 9 a.m. to 9 p.m.

• A ketogenic diet handbook will be provided the day of admission for your child.

• Bring all of your child’s medications and supplements.

• Bring a digital gram scale.

DischargeDischarge is considered when:

• your child is tolerating the diet

• your child’s blood sugars are stable

• Education is completed.

Follow-Up Follow-up clinic visits with the team are scheduled one month after the diet

starts and every three months after that. During every visit, lab work will be

done to check of diet efficacy and any side effects.

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The Ketogenic Diet

Contacts and Resources

The ketogenic diet is an established, effective, non-pharmacological

treatment for refractory epilepsy. The ketogenic diet is high in fat, moderate

in protein and low in carbohydrate. The goal of the ketogenic diet is to

control seizures and improve quality of life, with a potential to minimize the

use of antiepileptic drugs and its potential the side effects.

Contact InformationEpilepsy Staff (Providers or Nurses) 913-696-8950

Epilepsy Social Worker 913-696-9318

Ketogenic Dietitians 913-696-8168

Children’s Mercy South is located at:5808 West 110th Street

Overland Park, Kansas 66211

Ketogenic Diet Resourceswww.charliefoundation.org

www.matthewsfriends.org

http://myketocal.com

Contact InformationEpilepsy Staff (Providers or Nurses) 913-696-8950

Epilepsy Social Worker 913-696-9318

Ketogenic Dietitians 913-696-8168

Children’s Mercy South is located at:5808 West 110th Street

Overland Park, Kansas 66211

Ketogenic Diet Resourceswww.charliefoundation.org

www.matthewsfriends.org

http://myketocal.com

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