You remember plan A....
and you probably remember plan B.
Well, I officially announce that I now have a plan C!
Elisabeth's infantile spasms have not stopped, and I feel a bit like I am racing against the clock to find a solution. I just can't sit around and wait while such significant damage is being done. My sweet baby has been on her current med (plan B) for going on 6 weeks. It has failed to make any difference. So I am going to try a new approach. Forget the meds....I am going all natural.
After doing a bit of research I have become quite intrigued by the ketogenic diet. The ketogenic diet was developed by John Hopkins Hospital over 80 years ago as a way to treat epilepsy. This is a high fat, low carb diet that has proved to be extremely successful with controlling seizures and infantile spasms. So we are going to give it a try for dear Elisabeth.
She will be admitted to Sacred Heart Medical Center on Aug 18 so we can get this diet started. Elisabeth will remain in the hospital a minimum of 4 days to keep an eye on her blood sugar levels and to see how her body tolerates the diet. Once we bring her home we will continue the diet with the help of a pediatric dietitian.
There is only one reason why I am not thrilled about keeping Elisabeth to a strict diet for the remainder of her childhood. You see, I often think about how much Elisabeth will enjoy her other senses due to her lacking eye sight. A soft breeze on her face, the smell of freshly baked cookies, the sound of our birds chirping upstairs, and the wonderful tastes and textures that food has to offer. The diet will really cheat her out of the joy of food. Her food intake will be calculated and limited in variety. But I must remember that it might be an answer to prayers. The good news is that Elisabeth will never know all the tastes that she is missing out on. And she won't see that she is eating differently than everyone else.
So keep happy thoughts.....maybe this is our answer!
Elisabeth at the pool with Lorelai and Donald. If you watch carefully you will see her head bob down really quick, once at the beginning and then again towards the end of the video. Those are infantile spasms. You might not even notice it. They look harmless, but unfortunately, that's not the case.
