October 13, 2009

Ketogenic Diet Update

I just heard back from Paula Peterson, with Primary Children's Medical Center Neurology Department. Paula is the nurse practitioner who would be working with Bertrand, along with Dr. Sakonju, to start the ketogenic diet. Bertrand would be the youngest patient to start the ketogenic diet at the University of Utah. As a result of his age, rather than the typical 2-3 day hospitalization to start the diet, his would be a 3-5 day hospitalization.

As I was explaining to my fabulous sisters who were staying with us this week, the ketogenic diet is basically a super strict Atkins diet. There are next to no carbohydrates allowed. Beyond his actual food intake of fat and protein, Bertrand wouldn't even be able to use normal baby wipes, shampoos, soaps, or medicines with any traces of carbs since it is believed they may be absorbed through the skin. And, you'd be amazed at what has carbs that you wouldn't expect!

As Evelyn's dad explains, "the theory is it [the ketogenic diet] puts your body into ketosis, which causes your body to produce ketones. The theory is that these ketones bind with amino acids in the brain when the brain begins using them for energy (in place of glucose), and... does something to the chemical makeup of the brain that reduces seizures in about 50% of people, with about 30% of people showing a 90% reduction or more."

Much like with Evelyn, it may actually be easier to start Bertrand on the diet now than to wait. Bertrand has sensory integration issues which make him a very picky eater; currently milk/formula/pediasure and yogurt comprise the bulk of his diet. Since he prefers to drink his food, using the KetoCal baby formula would make an easy transition. And, since he has yet to develop a taste for typical kid's foods like juice, mac & cheese, french fries, cookies, pizza, etc., by starting him on the diet now, he'll never miss or feel deprived of those foods.

To implement the diet at home, away from the hospital, we'll have to administer daily urine tests for ketone levels. (Just a little cotton pad in his diaper. No, I was not about to ask Bertrand to pee into a cup!) Also, all of his food and drink must be weighed on an electronic scale and recorded carefully in a jourmal. And, since everyone knows how much Bertrand loves getting his blood drawn, there will be more frequent blood tests. :-P

There are several concerns with going on the ketogenic diet: hypoglycemia, kidney stones and stunted growth. Because of Bertrand's age, growth is a primary concern. However, both Matthew and I have come to believe that short stature in exchange for developmental progress is a trade we are willing to make. After a few months, if his seizures are not diminished on the diet, we'll have to slowly work him back on to a normal diet. Rapidly reintroducing the carbs after being on the ketogenic diet can cause grand mal seizures in some cases.

Moving forward, we'll be starting our 3 day food diary tomorrow morning. We'll be working with Eliza Hamilton, a dietitian, on preparing for and implementing the ketogenic diet. I hope to be hearing from her and scheduling B's hospitalization soon! I also hope that she can help us manage Bertrand's triglycerides within the scope of the ketogenic diet. (Cholesterol is a factor which, if not reigned in, could torpedo Bertrand's permission for the ketogenic diet.)

Triglycerides: 105 (30-100) High
VLDL: 21 (?-?) High
Calcium: 10.2 (8.7-9.9) High
Albumin: 4.1 (3.1-3.9) High
Alkaline Phosphate: 354 (145-320) High
ALT: 306 (5-45) High
AST: 172 (20-60) High
Hydroxyproline: 0 (6-50) Low

1 comment :

  1. Hi Cristina,

    My daughter Jade (who will be turning 4 in January) is just approaching the one-year mark on the ketogenic diet. I have a friend whose twins are not quite two and who are also on the diet, so I know it is doable! You sound very positive, which is a huge part of the battle. :)

    Jade still has tonic seizures in her sleep, but the diet has been a miracle for her. A year ago she was having TCs, myoclonic jerks, absence seizures, and horrible drop seizures and they added up to hundreds in a day. Now... just the sleep seizures.

    Have you joined the keto Yahoo group yet?

    Wishing you all the best!

    Mom to Jade, 3, MAE (Doose Syndrome)
    Keto Kid since October 27, 2008