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Sunday, May 27, 2012

The Ketogenic Experience

For two years in a row, my son has been discharged from the hospital two days before his birthday.  So, I believe our goal for next year is to be nowhere near a hospitalization on May 23rd.  This particular admission was necessary to begin a very specific diet.  The ketogenic diet has been used since biblical times, and can be extremely effective for some epileptic patients but it is not without risk.  The physicians we spoke to said that patients have died as a result of starting this diet.  The admission to a hospital setting is supposed to help prevent injury and death by monitoring specific labs and tests.  

Easton has a specific amount of calories he is allowed every day.  They are divided between three small meals. Meals are weighed each time for carb, protein, calorie, and fat content.  He is allowed nothing more than exactly what I measure out at each meal.  So, as you can imagine I spend much of my day discovering new meals and weighing them out to make sure they are "keto" appropriate.  I had anticipated this part of the process, but like all other things associated with epilepsy, it has been so much more than that.

Starting this diet makes people feel sick to their stomach.  Some kids lose their drive to drink fluids.  This was the case with Easton, and it has taken 4 days for us to get him to drink a moderate amount of water daily.  I feel like I'm constantly forcing him to take his cup.  But, if we don't get him to drink he's at risk for dehydration and kidney stones associated with the diet.  He has to drink whipping cream with every meal, and at first he took it very well, but considering we are a week in and he's had it every single meal for 6 days in a row I can understand his sudden reluctance.  The problem is he HAS to drink it.  It's not a choice.  He also HAS to eat everything we have for a meal within a half hour time frame.  How many 2-year-old's do you know that eat on someone else's schedule?  I can usually get most of it in him, but his meds and diet itself make him have less of an appetite at times.  And sometimes he's really excited to eat, but not the things I'm able to give him.  The other night we all had pizza and he sat at the table and cried and cried as his siblings ate their carb-filled food.  It absolutely broke my heart to be unable to explain to him why I'm denying him something as simple as a slice of pizza.  Suddenly I wasn't so hungry anymore, and although my stomach had been growling a few minutes before, I couldn't eat if he couldn't.  Don't mistake this for martyrdom.  It absolutely is not.  In fact, I went back hours later and ate some pizza.  It's the pain of seeing my child being deprived of yet another thing he loves that curbs my appetite.

He's also supposed to work on feeding himself for occupational therapy purposes, and actually he does a decent job.  But, how can I do that and make sure he doesn't spill anything.  He is allowed a VERY specific amount of calories per meal, and each gram of food is important to maintain his ratio of  fat:carb/protein.  I don't know about you, but when my kids eat the floor looks like a freaking minefield when they're done.  I really don't know how they gain any weight at all because I swear there ends up being more food on the floor than what started on their plates.  So, I guess that part of OT is out for now and we'll have to worry about that later.

The other part of this that I probably should have anticipated is the hope factor.  I've had several people read about the diet and say encouraging things like, "so this could be a cure, huh?"  Which is true, and helpful in many ways, but it also gives way to the scariest thing I do on a daily basis...hope.  I can weigh food. I can watch him cry because he doesn't understand.  I can learn new recipes, and try new ways of cooking.  I can deal with the interruption of sleep and the look of lethargy on his face.  But, what I can't do, is hope.  Even though I try to talk myself out of it, somewhere in the back of my brain is this little light of possibility.  This "what if" area that doesn't allow me to deny the possibility of great things happening.  I realize this is the part that also keeps us going, but I can't even describe the feeling of despair each time that hope is dashed.  I have actually thought and at times "expected" to lift him out of his crib some morning and NOT see his little head jerk to the side.  Of course this never happens and each time that hope wells up and gets crushed, I feel such a sense of loss and defeat.  My stomach starts hurting again, and I feel the tears threatening to spill over.

I hate shoving food into my kid's mouth.  Especially food that I wouldn't even want to eat.  However, last night I found a recipe for macadamia nut pancakes and I adjusted it to fit his ratio.  He even gets two drops of a very special syrup added to this meal.  I was uncertain about the consistency of the batter and I wasn't sure it was going to work at all, but I tried it anyway.  And you know what?  He LOVED it!  He squealed with delight and reached for the plate over and over again.  His smile was so beautiful and so full of light.  I loved every second of feeding him that meal.  It makes me so happy to see him happy.  That's really all I want for him, and this time it was my turn to cry.