In this section
The ketogenic diet is a strict, medically supervised
diet that may be used as a treatment option for some
children with epilepsy. It is a very high fat, very low
carbohydrate and moderate protein diet that ensures the
body will burn fat instead of carbohydrate for
energy. Burning fat for energy produces "ketones", and
for some children having a very high level of ketones in their
blood helps to reduce seizure activity. The mechanisms
which it does this by are not fully understood.
The ketogenic diet is not a "natural therapy". Less is
known about the beneficial and adverse effects of the ketogenic
diet than other treatment options for epilepsy such as
antiepileptic medications, surgery and the vagal nerve
The ketogenic diet is most frequently used for children
with poorly controlled seizures. Assessment by a paediatric
neurologist, experienced in epilepsy and ketogenic diet management
works the best. There is emerging evidence to support its
use in young children with severe myoclonic epilepsy of infancy,
myoclonic astatic epilespy, Lennox Gastaux Syndrome, infantile
spasms and uncontrolled absence seizures. It is also the treatment
option of choice for children with Glucose Transporter 1 Deficiency
In our Program, only children with severe epilepsy which has not
responded to medication, and who are not suitable for surgery, are
considered for the ketogenic diet. Our Program allows for
only one child per month to be admitted for the ketogenic diet, due
to limited resources.
All children and families require a referral from their
neurologist or paediatrician to the ketogenic diet clinic for
assessment of their suitability. At this visit families
will be seen by a paediatric neurologist, dietitian
and epilepsy nurse specialist who are experienced in the
implementation and monitoring of the ketogenic diet. If the child
is felt to be suitable and the family wish to proceed they will
attend a second education session.
Families are informed about the ketogenic diet before
embarking on this form of treatment. Information is given in
the form of written material and formal "one on one"
discussions. Areas covered include:
If a joint decision by the Ketogenic Diet Team and the family is
made to proceed with the diet, a hospital admission is
Frequency and type of seizures must be documented for one month
prior to commencing the ketogenic diet and throughout the course of
the diet. The neurologist will review medications before the diet
is commenced, changing syrup medications to tablet form, due
to their high sugar content.
All children who are to commence the diet are admitted to
hospital for a 4-5 day stay. Usually, the admission is from
Monday to Thursday. Admission is initially to Cockatoo Ward and then
families may move to Parent Accommodation.
The aim of the diet is to induce ketosis. Children will be
given a ketogenic formula called Ketocal®. The child is also
encouraged to drink water throughout this time. If
ketosis is being established and the ketogenic formula
tolerated, food is introduced after a 48 hour period until the
calculated ratio and energy level is reached. The dietitian
calculates all energy requirements and grades the fat ratio up
Baseline blood, urine and radiological investigations are
performed on admission. Throughout the hospital admission
blood sugar levels are monitored to ensure that they do not become
too low. To do this, finger prick blood tests are performed every 6
hours and may be required more frequently if sugar levels do
drop too low. Low blood sugars are treated with a high sugar
drink. Likewise, blood ketones levels are also monitored 6
hourly and urinary ketone levels are tested at least twice
daily. Special dipsticks (Keto-stixs™)
indicate ketone levels and this form of monitoring will continue at
home. The child is weighed at the beginning and end of
the admission to monitor for weight losses or gains.
All medications continue as normal. Medications will be
given in tablet or capsule form.
All children are encouraged to maintain normal levels of
activity and are not confined to bed. Play therapists and teachers
become involved with families during the admission. Seizures are
monitored by parents and staff.
Parents are encouraged to participate in all aspects of their
child's care throughout the hospital stay as this is considered
part of the education process. If the child is tolerating the diet
and the family feel comfortable with the diet by day 3,
they move from Cockatoo Ward to the Parent Accommodation located within the hospital. Contact with the
Ketogenic Diet Team is maintained through this time until
discharge on day 4-5. Regular education sessions occur with
the dietitian and epilepsy nurse coordinator to ensure families
will be able to manage at home.
What happens after discharge home?
Twice daily urine ketone monitoring and regular
weights need to be recorded. Based on this, fine tuning of the
diet, especially for the first few weeks at home, is required.
Close contact with the dietitian, epilepsy nurse and neurologist is
maintained throughout this time. Appointments will be made for
formal outpatient review after one, two, three and six
months, but more frequently if required. Routine blood tests will
continue to be taken at regular intervals.
A trial period of at least 3 months is needed to
assess whether the ketogenic diet is having beneficial effects
on the child's seizures. Antiepileptic medications should continue
unchanged through this period, unless otherwise advised by the
neurologist. If there is a significant reduction in seizures, the
diet is maintained in most cases for approximately 18 months to 2
years. Medications may be reduced or withdrawn during this period.
If after the 3 month trial period there is no significant
improvement in the child's seizures, the diet is not tolerated, or
the diet is judged too difficult to manage, a joint decision
between the family and the ketogenic diet team will be
made to determine whether the diet should be ceased.
The ketogenic diet does not control seizures in all
children. In fact , only a relatively small proportion
of children benefit significantly from the ketogenic diet. A recent
randomised controlled trial from the United Kingdom found that 38%
of children had a substantial (>50%) reduction in seizures and
9% had a >90% reduction in seizures (Neale et al). An analysis
of studies describing use of the Diet from 1990 until 2005 found
that approximately 15% of children became seizure free and 33% had
more than 50% reduction in seizures (Kune et al).
This roughly equates to 1 in 3 children having a significant
reduction in seizures, 1 in 3 having only a slight improvement
in seizures, and 1 in 3 having no improvement in seizures.
Some centres around the world report up to 50% of their patients
having a significant improvement with the diet, however, it should
be noted that patient selection and reporting differ between
Meals and snacks are produced to meet energy requirements for
normal growth and development. The meal pattern is designed
to mimic the child's usual meal pattern. Meals appear small because
of the high fat content. As the diet is nutritionally inadequate
daily vitamin and mineral supplements are necessary.
Below is a range of meals suitable for children of
Egg and cheese salad
Puree zuchini and chicken
Chicken stir fry
Egg and bacon quiche
Equipment essential for home includes:
The ketogenic diet must be strictly followed at all times.
Children attending play group, kindergarten, school and social
occasions should have ketogenic diet meals arranged for
them and all carers and teachers must be fully informed of the
diet. Some families initially find planning and preparing the diet
time consuming, but with practice this becomes easier and
faster. Shopping practices may change, but costs are comparable to
normal household budgets. The initial outlay for necessary
equipment may be a cost factor.
Loss of ketosis may occur in some children on the ketogenic
diet due to:
Constipation can occur because of the small amount of food
and fibre consumed.
Weight loss or gain.
Inappropriate food related behaviours such as refusal of certain
foods, stress in house associated with change of diet.
Compliance of children may be an issue especially in some social
Long term side effects are monitored for and may include:
We recommend that any questions specific to your child or
treatment be discussed directly with your Neurologist
or an Epilepsy Nurse Specialist in the Neurology Department.
The following sites may be useful for further general
information regarding the ketogenic diet.