At the age of 14, my son's care has become guesswork. The first time I felt conflicted on his care was when we lived in Boston and were trying to decide if he should have surgery on his ever tightening leg muscles. Now, I face trying to decide if Chris should start the Ketogenic diet or not. And it's become a huge decision, and not everyone is on-board.
What would you do for a 30% chance of successfully minimizing your child's seizures?
Is 30% good or bad odds?
The administration where my son lives is not on-board for what it takes for him to begin the diet. But success is established, or should I say failure is established, at three months after beginning the diet. If it doesn't work after 3 months, the diet is abandoned.
How does a 30% chance of success that is verified after 3 months sound? The facility where my son lives has to take on a the responsibility of testing Chris' blood glucose levels daily after a one week stay in the hospital. They need to test his urine ketone level daily, too. They also have to mix the keto formula correctly and accurately every day. They need to be on-board.
The facility must notice if my son goes into a state of acidosis or a state of hypoglycemic shock. They need to notice and respond appropriately. Will they do this? Will my son be safe?
Suddenly, 3 months sounds daunting for a treatment that probably won't work. 30% chance of success vs 70% chance of failure. 1 in 3 odds doesn't sound too good, but we'll know in 3 months if it works.
I asked the supervisor of the facility today what she will think if the diet fails after 3 months of trying it out. She was silent for a minute before saying, "I'd think, Damn Kelly!"
I guess I can live with that! Damn, Kelly! So what else is new...