Thursday, July 9, 2009


If I may be so bold as to say, life has thrown me a few lemons lately. So bear with me through this post as I try to make some awesome lemonade! As some of you may know, my second child, Tanner, has been diagnosed with epilepsy. Four weeks ago to the day, we initiated a very rigid and unusual diet known as the "ketogenic diet". The concept is to put his body in a state of starvation so that his blood produces what are known as ketones; hence the name of the diet. Doctors and other smart people who have studied epilepsy and the diet extensively honestly don't know why, but the high amounts of ketones in the blood cause an absence of seizures. This diet has been around for more than 100 years and was initially growing rapidly in popularity but approximately 50 years ago, along with the introduction of several new anti-epileptic medications, the use of the diet faded and seemed almost forgotten. However, fortunately, a famous director in Hollywood whose son was diagnosed with a difficult-to-control form of epilepsy was initiated on the ketogenic diet and had great success. So, his director dad made a film about the ordeal (called "First Do No Harm" starring Meryl Streep) which spread the word about the diet once again. I feel extremely blessed to live in a day and age where the medical community is making great strides in pediatric epilepsy and am grateful to live in a day where this diet is more widely accepted than it used to be. Tanner's story is a long and difficult one to tell but we will save that for another post! And even with all the positive things said about the diet, it is EXTREMELY rigid and difficult to follow. This is where the lemons come in...
After over a year of trying (and failing) one medication after the other, we finally convinced doctors that this diet is what we really wanted. So we began researching what exactly it was that we were getting ourselves into. The month to two months before he was started on the diet, I can remember sobbing tears of joy at the similar stories of other parents with their epileptic toddlers who had had great success on the diet and yet sobbing tears of sadness at the difficulty and rigidity of the diet. I remember reading how one little girl began having seizures after being on the diet for a few months and they finally pinpointed it to the fact that she was eating 4 (that's correct - FOUR) extra nuts in a day!!! Oh my gosh!! I was scared out of my mind and overwhelmed at the thought of the task ahead of me but nontheless, I knew this is what would work for my little boy and would be the only thing that would eventually bring my son (or "son-shine" as I like to call him) back for good. Thus, Tanner was hospitalized June 9 through June 12 of this year to initiate the diet. One has to be hospitalized to begin the diet because, like I mentioned earlier, your body literally goes into a state of starvation. Which can cause some serious problems, as you can probably imagine. Due to the difficulty of controlling Tanner's epilepsy (his diagnosis is "Doose Syndrome") it was recommended by the dietitian that he begin the diet at a 2:1 ratio of fats to carbs/proteins and be worked up to a ratio of 4:1 by the third day of hospitalization. By Thursday, June 11 he was worked up to the full ratio and there has been no turning back (looking back, maybe, but no turning!). After being released from the hospital and being home for a few days, the diet really seemed almost too much to bear. He was constantly asking for foods he couldn't have and for more food in general. Oh yeah, did I mention his caloric intake is restricted as well?? And he can have absolutely NO sugar!! That's right, starvation means starvation!! Now, don't get me wrong, I am not "starving" my child - he is getting sufficient calories to continue growing as he should and is not in a constant state of hunger. The amount of fat he eats sticks to his ribs and fills his belly just fine.....but it is for that exact reason that his caloric intake needs to be limited....too many fats means a fat kid!! And fat has a LOT of calories in it!! My goodness! So, if you are still with me at this point, I will try to sum things up -- my life has been flipped upside-down as I knew it!! Not only has Tanner had to change his eating habits, but our entire family has had to do things a little differently than we used to. My girls can no longer carry bowls full of fish crackers or packets of fruit snacks all over the house. I can no longer wait 'til dinner time to put away the boxes of cereal (like I did that! lol) and my sweep and vacuum have become my best friends. Maybe I am a little paranoid but if a little girl can have seizures over four extra nuts, Lord only knows what is stored beneath the couch cushions will do to him! Yikes! Although this has not been my most favorite four weeks of my life, I try to remain positive, count my blessings, and focus on the positive. So far, Tanner's seizures have reduced at an amazing rate and we have already begun to wean his anti-seizure medicines. And although it can be SO discouraging when he refuses to eat a meal (that I carefully calculated and weighed) and ends up dumping his cup of cream on the newly mopped kitchen floor or vomits his previous meal because his stomach decided it didn't like that particular combo of fats, and I just want to pull my hair out and run to the nearest mental healthcare facility...............I take a deep breath, type out another chapter on my blog, and squeeze the heck out of my lemons so that I can at least get a small glass of lemonade (sweetened with Stevia, of course!). And although my posts seem to get longer and longer, I hope you all bear with me and perhaps together we can combine our lemons to make one awesome pitcher of that refreshing summer drink!