Pre-Initiation Caregiver Training

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Transcript Pre-Initiation Caregiver Training

Pediatric Neurology: Paul R. Carney, MD
Zhao Liu, MD, PhD
Edgard Andrade, MD
Pediatric Gastroenterology (GI):
Joel Andres, MD
Christopher Jolley, MD
Research Coordinators: Peggy R. Borum, PhD
Lauren L. Jones, PhD
Overview of KT

Fasting was recognized as a way to control
seizures.

Seizures would return once a normal diet
was resumed.

In 1921 KT was born.

Although the therapy helps many children,
we do not know how it works.
Ketogenic Therapy (KT)

High fat, low carbohydrate, adequate protein
diet

Ketogenic Ratio = Fat : protein + carbohydrate

Forces the body to utilize fat (in the form of
ketones) rather than carbohydrates as the
main source of energy
 Ketones are a byproduct of fatty acid metabolism
Ketogenic Therapy (KT)

Neurological treatment
 not a diet for weight control

Similar to your other therapies for seizures
 such as antiepileptic drugs (AEDs)

All changes that are made must be cleared
by the research team and your clinical
providers

For these reasons, we do not call it the
Ketogenic Diet
Ketogenic Therapy (KT)

KetoBuddy
 Support network
 Improve your child’s care
 Research the mechanism of KT
 Weekly contact
 Data collection
 Create and make meals
 Resource to assist you with all your child’s needs
 We DO NOT change medications or provide any
medical advice.
UF Ketogenic Therapy Research
Program


KetoBuddy support system
More frequent monitoring of your child’s overall health
 More labs
 More measurements
 Metabolic cart
 Daily records
 Monitor the progress and personalize your child’s therapy



Patient visits are at Shands in the GCRC
All research procedures are done free of charge
Inpatient visits at the GCRC are free of charge
Qualifications for Ketogenic
Therapy

Typically (but not exclusively) used for
children

If AEDs or other therapies are ineffective or
produce undesirable side effects

If a surgical procedure is not an option

Intended for patients without fatty acid
oxidation disorders
Before Initiation

Food Preferences Questionnaire

In order to help your child adjust into a state of
ketosis easier, the weekend before:
 Limit simple sugars and starches
 Drink sugar-free or unsweetened liquids

Night before Initiation:
 Overnight fast for at least 8 hours
 Allowed to have water and medications
Initiation

Day 1-2
 Start on a 1.5:1 ratio of fat : protein + carbohydrate
 Ratio increases by 0.5 every 1-2 meals

Day 3
 Usually discharge between a 3:1 to 4:1 ratio
What to Bring to Initiation

Caregivers Guide

Foods/drink for Initiation that you and your
KetoBuddy discussed

Daily home records of seizures

Multistix 10 SG

Food Scale

All medications and supplements in their original
bottles

Videos, DVD player and DVDs, favorite toys,
coloring books…something to keep your child
occupied and feel more at home
What will be provided at Initiation

A mini fridge, microwave, and kitchen
supplies

One caregiver will be provided with
meals during their GCRC stay

Wireless internet access is available if
you wish to bring your laptop
What to expect the first few
weeks after Initiation

Adjustment period may include
Lethargy
 Nausea/Vomiting
 Hunger


Record keeping