We are so pleased to share a special guest blog post today by Robyn Blackford, RDN, LDN, who is a ketogenic dietitian at the Ann & Robert H. Lurie Children’s Hospital of Chicago. She is also a Keto Ambassador. Robyn often receives questions from her patients’ parents about how to educate non-neuro medical professionals about the requirements of their child’s ketogenic diet. She compiled a list of her tips to share with all of you. Thank you so much for sharing your insights and knowledge with us, Robyn!
If your child is on dietary management for intractable epilepsy you will soon find that you are the expert. It is safe to assume that most people are unfamiliar with the ketogenic diet. Sadly, this would also include many healthcare professionals. It is true that more and more people are hearing about the diet and understanding it’s general rules, but oftentimes I hear from families that they are the ones that are teaching other healthcare teams (besides their neurologist) the intricate details of the diet.
Have you gone to your local pediatrician, dentist, or maybe even another healthcare team within the same hospital that manages your child’s diet just to find out that nobody else knows what to do in regards to the diet? Even the simplest illness such as a cold becomes a huge undertaking by the pediatrician. What used to be a simple dentist visit now takes much more planning than it did before the diet. Here are a few things to consider when your child has an appointment with another health professional outside of the neurologist’s office.
Share info ahead of time. Leading up to the planned admission date for your child’s ketogenic diet initiation, you can prepare your other doctors for this major change in your child’s life. Share diet information that you receive from your neurologist and dietitian with your pediatrician and any other doctors or medical teams that they see. The authors of Keto Cookbook offer a sample letter that your neurologist can use as a template. Also, have the doctor’s office add “dextrose” as an allergy in your child’s electronic chart. This will help to flag medications that are prescribed to your child if it is in liquid form and not allowed on the ketogenic diet. Doctors’ offices usually review allergies with you at the beginning of every visit. This is a good time to reiterate that you child is following a special diet.
Your child doesn’t have to try new foods. When you’re using the ketogenic diet for management of epilepsy, you get a free pass to use the same meals and snacks over and over again. Reminding the pediatrician and therapists of these things will help them to remember the specifics of the diet. They are used to encouraging their patients to try new foods, so give them a little leeway if you have to repeat yourself to them.
Keep repeating yourself. I’m sorry that you’ll have to do this, but it’s true. People, even professionals looking at your child’s medical chart, have a short memory and may forget about the special conditions and extreme restrictiveness of the diet. People may not “get it” or take the restrictions seriously. You’re repetitiveness can only be helpful to avoid errors.
Provide exact names or samples of products. If your keto kid needs a specific toothpaste at the dentist office or an exact consistency of liquids with the speech therapist, then help them out by offering a sample of the product your child needs or a list of acceptable options for use in that office. The more you “spoon feed” that professional information about what your child needs, the more likely you will have a successful visit that encourages compliance on the diet. It makes for a more pleasant experience in that office and you can focus on why you are there instead of focusing on the diet for so long.
Be gentle and kind. You’ve heard the old adage: You can catch more bees with honey than you can with vinegar. Repeating yourself, correcting people and shielding your children from unwanted foods is exhausting. I understand. But, I also know that health professionals (who love taking care of your child!) will appreciate you and listen better when you handle them with the same kid-gloves as your keto kid. Showing appreciation to your health professionals will go a long way. They might just remember the diet guidelines easier when mutual respect is shared.
Send them to the websites. There are many great resources for parents and professionals for the ketogenic diet. Instead of spinning your wheels and trying to explain the diet (again and again), simply send them to these websites. Here are a few that I like and trust:
- The Charlie Foundation
- Matthew’s Friends
- The International League Against Epilepsy’s (ILAE) Ketogenic Diet Center
- Nutricia KetoCal site
In addition to the neurology team, keto kids may be cared for by pediatricians, emergency room professionals, dentists, community hospitals, surgeons, gastroenterologists, nurses, therapists and the list goes on. We hope this blog post has helped you to help your other medical teams take the best care of your child while on the ketogenic diet.
Again, as a keto parent, you really are the expert! Do you have any experiences or advice to share with others? Please share in the comments below.