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Pre-Initiation Caregiver Training

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Presentation on theme: "Pre-Initiation Caregiver Training"— Presentation transcript:

1 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

2 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.

3 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 For every 4 grams of fat you have 1 gram of pro +

4 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

5 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. As your child’s KetoBuddy we are here to provide a support network for your family, gather information about your child, attend clinic visits, and notify the clinic staff of any non-urgent issues to be addressed If you have a medical emergency, contact your clinical providers. Research the mechanism of the diet to improve therapy

6 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 Research procedures include blood draws, metabolic cart. The EEG is a standard of care so your insurance will be billed for that. The stay at the GCRC is covered if you have to stay over night.

7 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 we screen for fatty acid oxidation disorder prior to your child’s initiation onto KT.

8 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

9 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 Procedure is subject to change depending on how your child tolerates the ratio Meal schedule is also dependent on what your child usually eats

10 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

11 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

12 What to expect the first few weeks after Initiation
Adjustment period may include Lethargy Nausea/Vomiting Hunger Record keeping


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