Tuesday, March 27, 2012

Purple Day

Sorry everyone, I'm not keeping my promises.

Yesterday was Purple Day, a day drawing attention to the plight of those who have epilepsy.

Generally my husband and I make cupcakes for his work, and I try to remember Luke in some small special way.

This year I intended to do a series of videos helping people on the Ketogenic Diet. I'm sorry, that's just not going to happen right now.

L. is having a tough time. Its really hard to get him to eat, so I'm spending 7-8 hours a day trying to feed him and the rest of the time dealing with everything else. Hobbies like gardening or blogging don't even have a place in line right now.

Enjoy the lovely weather. I'll be back when I can.

Friday, March 9, 2012

Epilepsy Awareness

Usually this blog is about gardening, cooking, and other home adventures. Some my other adventures include having a son with Lennox-Gastaut Syndrome, a severe childhood epilepsy. 

Back in 2008 I started this blog as a way to keep myself occupied until I went back to school. My youngest was 3. Within months of starting this blog he was diagnosed with LGS. Every so often I'll mention it in passing, but since Purple Day is coming up, I figured I could do a bit more.

One of the ways doctors deal with difficult epilepsy is with diet. As long as people have known about epilepsy (thousands of years) its also been noticed that starvation stopped or slowed down the number of seizures. Since that's not really practical nothing was really done with the information. In the early 20th century it was noticed that high fat, low carb diets had a similar effect. Possibly because high fat (ketogenic~diets which encourage ketosis) create a starvation response in the brain, forcing it to get its act together. 

Perhaps this would have revolutionized epilepsy care but soon after the first of the epilepsy drugs was discovered. Several more soon followed. No one thought the diet was needed. 

Fast forward to the late '80s. Folks at Johns Hopkins had quietly been using the diet for severe cases. During the '90s a Hollywood producer found it difficult to find any kind of help for his son with severe epilepsy. Eventually he ended up at Johns Hopkins and his son was placed on the diet. His reaction was so positive that the producer went on to start an organization to publicize the diet (Charlie Foundation) and produce a movie about the diet (First Do No Harm). 

Why am I telling you this? Because this has been an incredibly vitalizing choice for people who don't respond to modern epilepsy medications. Its given hope to thousands of people who otherwise had to watch their children lose vital brain function. And because it has a crazy-large impact on our lives here. 

So in honor of my son, I'm going to try to do a series of videos on living with the Ketogenic Diet. Cooking...especially baking...can be extremely challenging on the diet. I'd like to weigh in with some things for those who are new to the diet.

For my regular readers, please be patient. Spring is here and things will again become normal.