Wednesday, July 21,2010

Taylor passed out after a long hour of PT! LOL!

Life is like a box of Chocolates!

Finally, some good news! Taylor was admitted to Duke University Medical Hospital July 6th-13th to start a new diet called a ketogenic diet. This was very exciting news because we have been waiting since Febuary for Duke to hire a Nutritionist that specializes in this diet. She stayed in the hospital for 6 days in order to get everything straight before the docs would release her.

Now your probably asking what is the ketogenic diet and how does this help Taylor? Hopefully this info will help explain it......

By the 1920's doctors at the Mayo Clinic and Johns Hopkins Hospital realized that people could eat a very high fat diet with almost no carbohydrates(no pasta, potatoes, baked breads, or cookies) and significantly reduce or stop seizures for many people. They created an artificial diet which causes teh body to use fat for energy and produces chemicals called "ketones" as a by-product. It was named thed "ketogenic diet" and it allowed people with seizures to eat a limited amount of foods high in fat while they were trying to control their seizures. Basically, Taylor's diet will consist of 90% fat and 10% carbs/protein.

What exactly is a "ketone?"

Our bodies normally use blood sugar(glucose), made of the carbohydrates we eat, like rice and muffins, for energy. "Ketones" are chemical by-products which are made by the body out of fat when there is no glucose to be used for energy. The "ketones" can be used by the body for energy. The higher Taylor's ketone level is, the better chance she will have less seizures.

Another big change we had to do was switch all but one of Taylor's medications to pill form. This is not a hard change, since all we have to do is crush her medication and mix it with water. However, we have to allow for more prep time before she gets meds.

Now for the GREAT news! Since Taylor has started the ketogenic diet she has gone from 35+ seizures per day to almost non-existent!!! Today, she only had one visible seizure and the three days prior she didn't have ANY! It is amazing how much Taylor has benefited from this diet. It's like she's a new baby! She's so much more alert! She's kicking her feet again, having some head control, searching the room for voices, finding her voice, and SMILING all the time. It feels so good to see Taylor in this alert stage! We can't help, but to be excited for what the future holds.

She has a follow up appointment with neuro at Duke on August 4th. The hope is that they will start to reduce the amount of seizure meds that she takes. We have seen such an significant improvement in just 2 weeks. Imagine what could happen if she could slowly be weened from some meds!!!

Taylor also has a echo scheduled this Friday with her cardiologist. We pray every day for Taylor's enlarged heart to heal. Hopefully, she will have some progress! Thanks for your continued support and prayers!

Much love,

Tammy