Tuesday, May 12, 2009

Starting Ketogenics

A decision to begin the Ketogenic Diet with your child is exciting but overwhelming. It seems like a huge undertaking and involves big changes for your everyday life. Yep, not just for your child but for you and everyone in your household. It's risks are manageable and carefully watched over by your Neurologist and Dietitian. It works in 2/3 of the patients to varying degrees. That figure in and of itself is amazing! Ketogenics helps parents to feel empowered in the management of their children's epilepsy. You will make a difference!
It requires you to be organized, detailed, specific in creating meals, shopping, preparing and weighing every item of food in your child's world. It is overwhelming in the first few months as you help your child and entire family to adapt to this dietary structure. But it is completely do-able. If successful, it will be the best thing you've ever done! Ketogenics literally saved my child's brain and his life. It has been worth every difficult moment! Just jump in and give it the best you've got! Your child deserves nothing less!


Preparing before you enter the hospital.
  • Purchase some simple foods that your child already enjoys and can be worked into the Diet - butter, fresh berries, heavy whipping cream (check w/dietitian to determine which to buy for fat content), bacon, Hebrew National hot dogs, cinnamon, Hormel little sausages, cheese sticks, cheddar cheese, nuts (macadamian, peanuts, pecans, walnuts), eggs, cream cheese.
  • Check on-line at Bickford Flavorings. This company offers sugar free flavorings. Our most commonly used flavors are vanilla, chocolate and maple
  • Kool Aid - Some flavors are acceptable for Keto kids. Black Cherry and Cherry are two that have worked well for us. Check The Charlie Foundations' Keto food list for others. Remember that you will be purchasing the KoolAid packet only. It holds only the flavoring and no sugar. Once you mix it with water, you can add a sweetener approved by your dietitian.
  • Presentation is key.....Use small plates/bowls to help their smaller portion sizes look better. Always have a smile on your face when preparing and serving your child's food. Some craft stores, like Michael's, sell tiny tinfoil candy/muffin wrappers. We use these almost daily. I melt the butter/oil in his meal, add a tiny bit of cinnamon, pour into the wrappers and freeze. We call them "butter candies." Presentation is everything.
  • Remember that we all have emotional connections to our food. Your child has eaten "freely" from birth. Not only does his/her body have to adapt to getting its energy from a diet of 90% fat but the brain has to release those connections and the freedom of dietary choice. It's very hard. Expect your child to strive for control, act out and mourn the loss of their old way of eating. Eventually, your child will forget what "sweet" tastes like. You will all get used to the smaller and yet much more calorically dense meals.
  • When you leave for the hospital - Leave Behind Every Nutritional Ideal that you have held your entire life. "The Four Food Groups"...........Forget It! Remember 90% of your child's intake will be from fat. You don't have to balance the fruits and veges. His/her nutritional needs from those will be met in different ways. Fruits become highlights. Veges become variation. Just prepare meals that meet the guidelines and that will make them happy.
  • Family/Friend Relationships can be tricky in the beginning of the diet. No matter how close you are with your extended family or your friends and no matter how supportive they have been, it can be difficult for them to really grasp the benefits of ketogenics. They are not in the daily trenches of it and yet they will see the crying and the tantrums that go along with ripping a child away from his/her normal food habits. It can be tough. Just continue to reassure them of the positive possibilites with the Diet. Let them know the boundaries right away. Make it completely clear that if they give your child ANY food, it could cause seizures. Be honest, be strict and be clear!
  • For awhile, avoid eating desserts in front of your child. Do not allow family members to "pig out" in front of your Keto Kid. Until the new life patterns of eating are solid for your Keto Kid provide some support by pointing out dietary decisions that you make in your own life. "Mommy doesn't eat cookies anymore either. They are too much sugar for my body." or "You lucky kid, I wish I could eat cream cheese like you. I love it but it is too rich for me." Make sure that if you're at a family event (birthday party or school picnic, etc) that one parent skips the yummy dessert stuff and helps the Keto Kid to stay occupied away from their family.
  • It's okay to stick with only a couple of meals that your kid likes. You don't have to create a new cookbook. Creating a few "favorites" and using them for as long as possible is great. The reason it is great is because you want to eliminate the variables that might negatively affect seizure control. In the beginning, if your child's Keto diet is simply constructed, you can more easily work with your dietitian for seizure control. You can automatically rule out a food conflict. Some of the adjustments that will be made are ratio, caloric intake, water intake, supplements, etc.
  • Stay as pure as possible in the food choices. Avoid nitrates, aspartame, maltodextrin. For some children, these are seizure sensitive triggers. It's better to start with all natural items. (It is possible to buy nitrate free bacon;>)
  • Expect your child to be lethargic as their body transitions into Ketosis. This can take up to two weeks. You should see an "awakening" and "alertness" in your child's personality. We saw this within the first week. Report any throwing up to your dietitian immediately. One meal purged is nothing to freak about but more than one in a row can cause problems. A child that becomes too ketotic will become lethargic and continue to throw up. This is not good and you would immediately call your neurologist or Keto dietitian on call at your hospital.
  • Take good notes. My post on 1/28/08 is a sample of the tracking sheet that we use in my home to note specific gravity, urine ketones, meals, seizure activity and extra notes. Create one or copy and print mine. Purchase a three ring binder to organize your ketogenic life. It really helps.
  • Build a good relationship with your dietitian.
  • Be patient with yourself. It's a huge change. Take one day at a time. One meal at a time.
  • Lastly, find some kind of Keto support. Is there a successfull Keto family that lives near you? Ask your Keto Dietitian and Neuro for a reference. I love the Keto Yahoo group. Someone is always awake in some part of the world and will help you with your questions. It has helped me and I support it by helping other families.


©2009 KETO KID | by TNB