Touring with a Special Diet Child… Part 1: The Planning

Well, I’ve gone and done it. I canceled my ADRs for Hollywood & Vine and Sanaa for our upcoming July trip.  Hollywood & Vine was going to be my youngest son’s  4th birthday meal and I’ve been trying to get into Sanaa for years now.  No, the trip has not been canceled or in danger of being canceled.  Why the heck would I do something crazy like that?

You see, our 4 year old has epilepsy.  He has been on approximately 9 medications that have failed and we have now moved onto what the medical field calls Ketogenic diet.  It is a high fat, low carb diet that somehow adjusts the chemicals in the brain to reduce or completely eliminate seizures.  The meals that have to be prepared are measured to the nearest .1 gram and much of the goodness found at WDW is not on the diet.  When we go to the World at the end of July 2016, we would have only been on the diet for a month.  So the wife and I decided that since we will still be newbies to diet, it would only be fair to us and the boy to just cancel the ADRs and modify our touring.   Yeah, we could tell the chef of dietary restrictions, but as you will see below we will feel better preparing the meals ourselves.

Without getting too technical, the boy must have X amount of fat, carbs, protein and calories that are put into a calculator and magically produces a number that we must stay within in order for this diet to work.  Eggs, bacon, lots of butter, some fruit and veggies are some of the foods that are allowed.  The foods must be meticulously measured out and he must eat it all (our major struggle at the moment).  Any deviations could cause the diet to fail and seizures to re-emerge.

This has obviously thrown a major monkey wrench, even gorilla wrench, into our lives.  So, how are we going to tour the World with all these restrictions?  Don’t worry, we have a plan.

family and vader

First hurdle: getting to WDW.  We always take the 7-9 hour drive from central South Carolina to Orlando.  For meals we would just hit the drive-thru of whatever “grease house” is on route and drive on.  Now we are going to have prepared lunches and snacks that will be consumed at a rest stop, adding extra time to our trip.  All of us will now enjoy a tuna-fish sandwich and broccoli instead of a Big Mac and fries.

Second conundrum: Where to stay?  We were booked for a Savannah View studio at Jambo house.  This was our first stay at AKL and were overly excited about getting to experience the resort.  However, we now need at least a 1-bedroom Villa so that we can take advantage of the full kitchen to prepare the youngster’s meals.  With less than 30 days left to vacation time I hit the DVC website to find one for the length of stay.  Of course, there were no 1-bedrooms at AKL (or anywhere else we wanted to stay without having to change rooms at least once).  So I did what any man who loves their children would do: I called DVC and gave them the sad story of what we needed and why we needed it.  Through Disney Magic, and a most gracious and awesome Cast Member named Lolito, we were able to book a 1-bedroom at Wilderness Lodge for length of stay.  Not our first choice, but good enough!

Third, and hopefully final hindrance: Meals in park: The meals and snack will be prepared in the kitchen that will be placed in plastic containers and put into a cooler.  When meal time comes around, we will essentially do a child swap.  The youngest will dine on his prepared meal while one of us stays with him.  The older one will go with the other parent to a quick service meal and then switch with the parent who stayed behind.  Not ideal, but it would not be fair to eat a good ole’ Columbia Harbor House lobster roll and homemade chips in front of a child who can only have 2 slices of salami and some broccolli slathered in ranch dressing.

the other mickey

To the thousands of readers who took time out and read about this, thank you.  I don’t normally put personal stuff like my child’s condition out to the public, but I feel that it needed to be said so that someone could possibly learn from it.  Part 2 will be a trip report.  Not about how much we enjoyed the world, but from our experience with dealing with this diet and stuff we learned that could help us in planning our next trips.  If you have any questions please feel free to reach out to me.

Twitter: @turkyleg1

Facebook: Kyle Ostrander

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