Pediatric Neurology: Paul R. Carney, MD


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Pediatric Neurology: Paul R. Carney, MD

  1. 1. 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. 2. Ketogenic Therapy (KT) <ul><li>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 </li></ul><ul><ul><li>If you have a medical emergency, contact your clinical providers. </li></ul></ul><ul><li>Our main goal as your child’s KetoBuddy is to improve your child’s care and explore the possible mechanism of the diet in hopes of improving your child’s therapy. </li></ul><ul><ul><li>So what will we be doing? </li></ul></ul><ul><ul><li>Contacting you through phone calls and emails to get updates on your child’s progress on the diet. </li></ul></ul><ul><ul><li>Collecting data at clinic and presenting information to your clinical provider. </li></ul></ul><ul><ul><li>Provide creative ideas for meals and tailor the meals to your child’s needs. </li></ul></ul><ul><ul><li>Resource to assist you with all your child’s needs. </li></ul></ul><ul><li>We DO NOT change medications or provide any medical advice. </li></ul>
  3. 3. Ketogenic Therapy (KT) <ul><li>KT is a neurological treatment </li></ul><ul><ul><li>not a diet for weight control. </li></ul></ul><ul><li>Similar to your other therapies for seizures </li></ul><ul><ul><li>such as antiepileptic drugs (AEDs) and VNS. </li></ul></ul><ul><li>All changes that are made must be cleared by your clinical providers. </li></ul><ul><li>For these reasons, we do not call it Ketogenic Diet. </li></ul>
  4. 4. Overview of KT <ul><li>Fasting was recognized as a way to control seizures. </li></ul><ul><li>Seizures would return once a normal diet was resumed. </li></ul><ul><li>In 1921 KT was born. </li></ul><ul><li>Although the therapy helps many children, we do not know how it works. </li></ul>
  5. 5. UF Ketogenic Therapy Research Program <ul><li>How are we different from other programs </li></ul><ul><ul><li>KetoBuddy support system </li></ul></ul><ul><ul><li>Data collection used for: </li></ul></ul><ul><ul><ul><li>Tailoring the therapy </li></ul></ul></ul><ul><ul><ul><li>Close patient monitoring for the needs of your child. </li></ul></ul></ul><ul><ul><ul><li>The Research Program requires more daily records from the caregiver’s part; however, they are utilized to monitor the progress and personalize your child’s therapy. </li></ul></ul></ul><ul><ul><li>More frequent monitoring of your child’s overall health. (more labs, more measurements, metabolic cart) </li></ul></ul><ul><ul><li>Patient visits are at Shands in the GCRC. </li></ul></ul><ul><ul><li>All research procedures are done free of charge. </li></ul></ul><ul><ul><li>Inpatient visits at the GCRC are free of charge. </li></ul></ul>
  6. 6. Description of the Ketogenic Diet <ul><li>High fat, low carbohydrate, adequate protein diet. </li></ul><ul><li>Ketogenic Ratio = Fat:protein+carbohydrate </li></ul><ul><li>Forces the body to utilize fat (in the form of ketones) rather than carbohydrates as the main source of energy. </li></ul><ul><li>Ketones are a byproduct of fatty acid metabolism. </li></ul>
  7. 7. Qualifications for Ketogenic Therapy <ul><li>Typically (but not exclusively) used for children </li></ul><ul><li>If AEDs are ineffective or produce undesirable side effects </li></ul><ul><li>If a surgical procedure is not an option </li></ul><ul><li>Intended for patients without fatty acid oxidation disorders. </li></ul><ul><ul><li>This is something we screen for prior to your child’s initiation onto KT. </li></ul></ul>
  8. 8. Before Initiation <ul><li>Food Preferences Questionnaire will help us select foods your child likes to incorporate it into their Keto-Meals </li></ul><ul><li>In order to help your child adjust into a state of ketosis easier, the weekend before: </li></ul><ul><ul><li>Limit simple sugars and starches </li></ul></ul><ul><ul><li>Drink sugar-free or unsweetened liquids </li></ul></ul><ul><li>Night before Initiation: </li></ul><ul><ul><li>Overnight fast for at least 8 hours </li></ul></ul><ul><ul><li>Allowed to have water and medications </li></ul></ul>
  9. 9. Initiation <ul><li>Day 1-2 </li></ul><ul><ul><li>Start on a 1.5:1 ratio of fat:protein+carbohydrate </li></ul></ul><ul><ul><li>Ratio increases by 0.5 every 1-2 meals </li></ul></ul><ul><li>Day 3 </li></ul><ul><ul><li>Usually discharged between a 3:1 to 4:1 ratio </li></ul></ul><ul><ul><ul><li>Procedure is subject to change depending on how your child tolerates the ratio </li></ul></ul></ul><ul><ul><ul><li>Meal schedule is also dependent on what your child usually eats. </li></ul></ul></ul>
  10. 10. What to Bring to Initiation <ul><li>Caregivers Guide </li></ul><ul><li>The foods for Initiation that you and your KetoBuddy discussed. </li></ul><ul><li>Daily home records of seizures and </li></ul><ul><li>3 day diet recall </li></ul><ul><li>Multistix 10 SG, scale, and all medications and supplements in their original bottles </li></ul><ul><li>Videos, DVD player and DVDs, favorite toys, coloring books…something to keep your child occupied and feel more at home </li></ul>
  11. 11. What will be provided at Initiation <ul><li>A mini fridge, microwave, and kitchen supplies </li></ul><ul><li>Some foods may be provided by Shands’s kitchen </li></ul><ul><li>One caregiver will be provided with meals during their GCRC stay </li></ul><ul><li>Wireless internet access is available if you wish to bring your laptop </li></ul>
  12. 12. Remember <ul><li>You can contact your KetoBuddy with any questions you may have about Initiation </li></ul>