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Use of the Atkins Diet for Children With Sturge Weber Syndrome

Phase 1
2 Years
18 Years
Not Enrolling
Epilepsy, Sturge Weber Syndrome

Thank you

Trial Information

Use of the Atkins Diet for Children With Sturge Weber Syndrome

If you agree to be in this study, we will ask you to do the following things:

Before the diet is started:

- We will ask you to keep track of your child's seizures daily for 2 weeks before
starting the Atkins diet and provide us with a 3-day food record as well.

- Baseline blood (about 2 teaspoons) and urine work will be obtained.

- We will give you a free copy of a carbohydrate-counting guide.

- You will be asked to fill out a 3-day food record.

On the diet:

- Give your child a daily calcium supplement and multivitamin.

- Keep a daily seizure log.

- Check urine for ketones (to make sure the diet is working) and specific gravity (to
make sure your child is well hydrated) twice a week and when you come to clinic.

- We will ask you to weigh your child at home every week, and we will weigh him or her
when you come into clinic too.

- Do not fluid restrict your child; please give plenty of carbohydrate-free fluids.

- You will give 20 grams per day of carbohydrates. We will give you instructions on how
to measure daily intake of carbohydrates.

- We will not change medications for the first three months. Do not change your child's
seizure medicines without checking with our doctors.

- For the first three months, we ask you to avoid store-bought low-carbohydrate products
(as they can have more carbohydrates than advertised).

After being on the diet for one month, Dr. Kossoff will contact you by telephone to discuss
how your child is doing. You can also speak with one of our dietitians. We will discuss
the 3-day food record with you

You will be asked to come to the clinic (outpatient center, 5th floor) for two follow-up

1. after being on the diet for 3 months and

2. after being on the diet for 6 months.

During these visits you will meet with one of our doctors and a dietitian. We will review
your child's seizure control and health. We may obtain blood (about 2 teaspoons). We will
check your child's urine for ketones and specific gravity.

If the diet is helping beyond 6 months, we will help your child continue on the diet with
clinic visits and labs as necessary, at a carbohydrate amount that is most helpful.

Inclusion Criteria:

- 2-18 years

- Sturge Weber syndrome

- Monthly seizures (at least)

- Tried at least two anticonvulsants

Exclusion Criteria:

- Prior use of the Atkins or ketogenic diets

- Patients with non-epileptic seizures (pseudoseizures) will be excluded

- Patients that are pregnant or become pregnant during the study will be excluded

- High cholesterol

Type of Study:


Study Design:

Allocation: Non-Randomized, Endpoint Classification: Safety/Efficacy Study, Intervention Model: Single Group Assignment, Masking: Open Label, Primary Purpose: Treatment

Outcome Measure:


Outcome Description:

Seizure frequency will be compared to baseline (pre-Diet).

Outcome Time Frame:

6 months

Safety Issue:


Principal Investigator

Eric H Kossoff, MD

Investigator Role:

Principal Investigator

Investigator Affiliation:

Johns Hopkins School of Medicine


United States: Institutional Review Board

Study ID:




Start Date:

May 2006

Completion Date:

May 2010

Related Keywords:

  • Epilepsy
  • Sturge Weber Syndrome
  • Epilepsy
  • Epilepsy
  • Klippel-Trenaunay-Weber Syndrome
  • Sturge-Weber Syndrome
  • Neurocutaneous Syndromes
  • Brain Stem Infarctions



Johns Hopkins Hospital Baltimore, Maryland  21287