When Tanner was only 14 months old, after multiple medicines unable to control his seizures, we decided to start him on the ketogenic diet. The Keto diet is a high fat, low sugar diet that has been proven to help control seizures in some people. It changes the source of energy for your body, so instead of your body getting energy off of carbs, it now runs off of fat. It is very strict because based on the bodies natural ability to make Ketones, every single morsel of food that goes into your body needs to be measured out. your body can absorb sugar from almost anything, so we had to change lotions, chap sticks, sunscreen, soap, etc... Not just food. At that time, Tanner was eating solely by mouth, so all his meals were specific recipes given to us by a team of doctors and nutritionists, which we had to measure out each day, for every meal. Luckily, Tanner naturally produces ketones easily, so getting him into ketosis was fairly easy. Tanner stayed on this diet for over a year, but it did not help control his seizures. We gave it our best shot at that time.
Last week we checked in Egleston Hospital to start Tanner on the Keto diet again, at almost 4 years old. Tanner has been seizing, with no break, for almost his entire life, after trying MANY medications, oils, steroids, etc.. After discussing this option again with his primary neurologist and his Ketogenic Neurologist, we were told that the diet is often more successful in kids who are a bit older. At 14 months old, Tanner was going thru tremendous growth spurts and monitoring how many calories of fat vs. protein vs. carbs was very difficult. He is also now solely tube fed, making it easier for Tanner to consume all daily calories, which is again necessary to maintain ketosis. We were given a potential 15% chance of success this time around. 15% may not sound like a lot to you, it doesn't really to me either, but if there's even a 1% chance of helping Tanner find some relief, we must try it.
Before checking into the hospital, I scheduled another swallow study. Tanner has had 2 prior and both times it showed aspiration. After the first test, we started buying a thickener to add to all his liquids, which at the time was the only thing he was aspirating. He was still eating purees by mouth. After the second test, we made the decision to put him on a feeding tube because it showed he was still aspirating liquids, which he was refusing to even eat anymore (bottles of formula), but it also showed aspiration of applesauce (purees). He had a delayed swallow, so the food would just sit in the back of his throat until he finally decided to swallow it and by that time, parts of it were being aspirated. He was getting very skinny and we simply didn't have a choice. Since then, Tanner has been completely tube fed, but we still make a couple thicker purees for him as a snack, just to give him the practice of using his jaw and tongue and swallow techniques. We would only give a few bites a day but his swallow seemed to improve because he loved eating so much, he gobbled it down! I was pretty sure he was still aspirating, but before moving to a diet that would limit us from feeding him by mouth even more, I wanted it confirmed. The swallow study test showed that he was now also aspirating the even the thicker purees we were making him. he no longer showed a delayed swallow. He enjoyed eating so much that he swallowed it right away, but parts of it were still being aspirated. The worst part about it is that he showed NO signs of it bothering him. No coughing, uncomfortable face, nothing. So unless we did the test, we'd have no idea he was aspirating anything. This is dangerous. It was now confirmed and although it was news I expected, it's never easy to hear. Tanner has always loved eating, so I am now faced with the impossible determination between quality of life and safety. To some of you this may not seem like a hard choice. You choose health and safety right? But for us, with a disabled child who shows signs of happiness for VERY FEW things, and so far has been pretty healthy in terms of viruses, sicknesses and pneumonia, you want to make sure he has all the things in his life he loves, as often as possible. And here we are, taking that away from him.
The day we checked out of the hospital we were given instructions on how to make his new formula while on the diet and all our choices and options for other products. My 1 main question was what we were to do when Tanner throws up, which has become a daily occurrence for him during rough seizures. We were told that it is that much more important to try and get Tanner's seizures under control now then ever because since he is aspirating so often, there's a good chance he is aspirating a little bit, every time he throws up, and while on a higher fat diet, those foods getting into your lungs could have a worse effect. This was not information I was aware of or prepared to hear because like almost everything else, I have no control over it. So...I cried for a little and then came to the same realization our family has had to come to since he was born...it is what it is. Life goes on and all we can do is to continue our fight.
Tanner is still in a very sleepy state from the diet and had very little changes to his seizures as it is too soon to tell anything. Please keep him in your prayers as I know you all do and let's hope for some relief for a little boy who really needs and deserves it!