Friday, April 26, 2013
What is the Ketogenic Diet and why would we put Owen on it? The Ketogenic Diet is an extremely high fat diet that induces ketosis, meaning that the body burns fat for energy instead of carbohydrates. For some reason that no one has been able to completely explain it greatly reduces or even stops seizures. The diet was actually developed in the 1920's , but fell out of favor with the discovery of new anti-epileptic drugs. It is usually only used now in hard to control cases where a patient has failed at least 2 drugs. Owen has achieved some seizure control with drugs, but only by taking near toxic levels of 3 different drugs at once. The "typical" dose of zonisimide for a child Owen's weight is 100MG a day, Owen is taking 175MG plus 2 other drugs. The Ketogenic Diet has about a 50% chance of reducing Owen's seizures by 50% or more. We have a 10 -15 % chance of eliminating his seizures altogether. His chance of achieving complete seizure control with drugs is basically zero now.
The Ketogenic Diet is a medical treatment, not just a diet like people use to lose weight. It MUST be done under close supervision of a doctor and specially trained dietician. Owen will get about 90% of his calories from fat. Every meal he eats will have to be carefully calculated to the TENTH of a gram. This is difficult to do with any child (easiest if the child is completely tube fed), but with Owen's eating issues we aren't sure if it will be possible without replacing his G-tube. For the last few weeks we have been trying to wean Owen off of several of his favorite foods which wouldn't be allowed on the diet (juice, french fries) and adding in items that would be allowed (bacon, olives). This week I tried making several recipes to see exactly what would be involved, and to see if we could get Owen to eat any of them (don't worry, we didn't feed him full keto meals, just samples along with his "normal" meals). It took me 1 1/2 hours to make 3 single serving meals the first time I tried. Have you ever tried to measure out EXACTLY 15 grams of olive oil? I now have. The second time it took me 45 min to make a 4x batch of one recipe. I tried that because the only way I can see this working is if we have pre-made meals ready to go at least part of the time. We will never be able to leave the house and pick up fast food if we are out longer than expected. I have a few more things I want to try this weekend and then I think we will be calling the Doctor to set up his start up appointments. We will probably be in Seattle for 3-5 days to start up the diet. If it becomes obvious that Owen is not going to cooperate with the diet we will have his feeding tube put back in. I'm really hoping we don't have to do that. It seems like such a step backwards after everything we have done to get rid of the tube.