The letter
K
Ketogenic, Ketosis, Keppra, Ketones, Ketotic....words that I have heard over and over and over throughout the past 5 days. Words that will hopefully lead to Elisabeth's epilepsy being controlled. Unfortunately, we have failed to see any change yet. Her neurologist is a little discouraged by this, as are we. It seems that with every new treatment we try, we are sure it will be 'the one'....the solution to stopping the seizures and spasms. It is still too early to give up on the diet, but I hope that we start seeing a reduction in her seizure frequency soon.
We have started to notice Elisabeth backtracking developmentally. This is stereotypical of infantile spasms. For example, she won't hold a rattle in her hands, she smiles less, she struggles with eating solids, and she can't usually push the keys down on her piano hard enough to make a sound. It's sad to realize that Elisabeth is not progressing developmentally and even sadder to watch her lose skills that she once had. Please, oh please let this diet kick into gear and put an end to these devastating spasms.
Here are images of our hospital stay. A lot of nonsense...but that's what you get when you leave me in a small room for 5 days with a digital camera and rechargeable batteries.
*** You'll notice one picture with Elisabeth and a stuffed dog. This gift was sent to Elisabeth from her friend Owen, a little boy in Virginia who also has hydrocephalus. Thank you Owen and family!
