Ketogenic Diet and Management Considerations

1. Ketogenic Diet and Management Considerations • Karri Larson, RD • Registered Dietitian • Gillette Children’s Specialty Healthcare Epilepsy Foundation of MN Conference November 13th, 2010

2. Non-Pharmacologic Management of Seizures At Gillette, we offer the VNS, Traditional Ketogenic Diet (KGD) and the Low Glycemic Index Treatment (LGIT)

4. Calculating the Ketogenic Diet • Ask the family for a detailed food history • Look at Growth Parameters, ht & wt, age • Determine calorie level (previous intake) • Put data into KGD computer program • Ketocalculator: web-based program • much easier than calculating by hand • also have used Johns Hopkins model

5. Sample Calculation • 13 year old boy weighs 30 kg, 136 cm • Has been eating an average of 1585 calories • BMR (47.5 x 24) = 1150 x 1.4 = 1613 cals • Needs1600 calories and 30g protein • 4:1 ratio • 160g fat : 30g protein + 10g carb • 160:40 • 4:1 ratio

6. 4:1 KGD 1600 calories • Boy typically eats 4 times daily • Will get (4) 400 calories meals • Meal times should be consistent • encouraged to eat at 8am, noon, 4pm, 8pm • Alternative Schedule for 3 meals with snack • (3) 500 calorie meals + (1) 100 calorie snack • encouraged to eat at 8am, noon, 5pm, 8pm

7. 400 calories Classic 4:1 Ketogenic Diet 40g Fat, 7g Protein, 3g Carb

8. LGIT KGD Typical American Diet DRI

10. Fluid and Hydration Needs • Calculated using standards based on weight • 30 kg boy would need ~1700 ml (56 ounces) • The KGD alters thirst mechanism • thirst is late indicator that the body needs fluids • Encouraged to drink often throughout day • Count fluid content of foods, jello, cream • monitor SG and other labs to prevent stones • May need to get creative to get fluids in

11. Vitamin/Mineral Supplementation • Food is best source of nutrients • The KGD is deficient in vitamins/minerals • very restrictive • Yearly evaluation of micronutrient needs • or when big changes are made in the diet • Computer program helps determine adequacy • Supplement with carb-free MVI/mineral • Bugs Bunny SF, Solace NanoVM, Phlexy-Vits • Calcium Carbonate,Vitamin D, phosphorous

12. Patient Education • Review Sources of Hidden Carbohydrates • corn sweetener, corn syrup solids, cornstarch, dextrin, dextrose, disaccharide, fructose, glucose, glycerin, high-fructose corn syrup, invert syrup, lactose, levulose, maltodextrin, maltose, malt sugar, mannitol, molasses, monosaccharide, polydextrose, polysaccharide, sorbitol, sorghum, starch, sugarcane, syrup, xylitol, xylose • The FDA allows food manufacturers to list zero carbohydrates on products that contain <1gram of carbohydrate in a serving • .75g of carbohydrates are significant to the KGD

13. Patient Education • Hygiene Products • often need to buy natural or organic versions of toothpaste, deodorant, sunscreen, bubble bath, lotions, etc. • Sick Day Guidelines • achieve fluid goals with clear liquids • advance diet slowly • give recipes for eggnog, bouillon soup, pedialyte • use half strength tube feedings or hold feeds

15. Fine Tuning the KGD... • After several months and efficacy is proven, we are more creative with meals • tacos, lettuce wraps, cheesecake, pizza • Incorporate more special products, SF jello • Use alternative sweeteners • Stevia, Splenda, Bickfords Sweet 10, Equal • Extracts, SF syrups, seasonings, spices • Educate parents on Ketocalculator

16. Fine Tuning • It is like skilled detective work…you must examine each component of the individuals personalized food plan…and investigate everything! • Breakthrough seizures can be related to: • eating something not allowed on the diet or bought wrong brand of food • stage of life changes: hormones, teething, puberty • tapering off a seizure med or change in dosage • illness or constipation

17. rigid and structured requires scale and accurate food measurements frequent doctor visits with subsequent tests, and procedures requires hospitalization, time intensive for families requires communication between all parties involved - grandparents church, teachers,etc labor intensive for dietitian negative side effects affects growth can be socially isolating is able to be administered via gastrostomy tube Or a combination of GT and oral consistency modification needs carb free agent Excellent results Vegetarian or organic Pros and Cons of KGD

18. Advice from a parent… • Limit temptation • Share the sacrifice • Keep an open dialogue • Simulate favorite foods • Make it fun (refer to it as the “magic diet”) • Validate often • Give Choices • Advocate and Educate • Praise often • Show tough love -adapted from Keto Kid…a doctor/mother whose son was successful on the KGD

19. More advice from parents… • “The hospitalization and first few weeks are rough” • Every day the diet gets easier and becomes more routine • “I wish I had considered the diet sooner” • Remember the alternative (more seizures) • Remember to “see the forest through the trees” • Learn firsthand instead of listening to, or reading online, someone’s KGD experience

20. Tips for Special Occasions • Provide love and comfort in a nonfood form • Organize activities that do not revolve around food • Challenge the SAD influence on the menu • do we really need stuffing, rolls, mashed potatoes, sweet potatoes, cranberry sauce, and 3 jello salads? • Do not serve family style, keep food in kitchen • For Halloween-hand out stickers, pencils, tattoos • Give books or toys to neighbors ahead of time • Attend school parties with your child and provide a keto friendly snack

21. Resources • Gillette Children’s Specialty Healthcare Keto Team • The Charlie Foundation to help cure Pediatric Epilepsy • www.charliefoundation.org • Epilepsy Therapy Project - www.epilepsy.com • CURE Citizens United for Research in Epilepsy -www.cure.org • www.massgeneral.org/childhoodepilepsy • Yahoogroups-ketogenic.com (parents group)