After last week’s adventures, Armand’s aunt (a NICU nurse) was able to help us “fix” his G-tube by performing her first “button” insertion, with no complications.
We’re in the process of adjusting Armand’s feeding tube formula. He has been on a mix of KetoCal and Polycose, but during the week in Minnesota, we were advised we should remove the Polycose from the mixture, and use a pure fructose instead. Fructose does not interact with the zavesca in the way that the carbohydrates in Polycose do.
(Quick background – Zavesca interferes with how the body digests and processes carbohydrates. Lactose can interfere with Zavesca, which is why Armand can’t have dairy. Other complex carbs like starches can cause diarrhea and gas. KetoCal is a low-carb formula prescribed to epilepsy patients. Polycose is a carb and calorie additive.)
After removing the Polycose for several days, we noticed that Armand’s seizures became fewer, shorter, less intense if they happened at all. Once we had to reintroduce Polycose (we had some formula premixed together; we had run out of the unmixed KetoCal and were in the process of getting an order for more), Armand’s seizures became more frequent, intense, and even changed a bit. Once this was passed on to Dr. Utz, who was coordinating between several dietitians and doctors on what his new formula will be, a Ketogenic dietitian was brought on board. Lindy talked with her on the phone, and describes her as “an angel sent from above”. She believes that by putting Armand into ketosis, we may be able to control Armand’s seizures to the point of being able to reduce his seizure medications.
So, after meeting with her in the near future, we are going to continue giving Armand KetoCal, and monitor his condition while he is in ketosis. He will be switched to a different version of KetoCal, one that has an even higher fat content, and we will be educated on how best to monitor him while on this diet.
More information can be found here: http://www.epilepsy.com/epilepsy/treatment_Ketogenic_Diet
And yes, being on a ketogenic diet can lead to some harsh breath.