Feeling some hope tonight and thought it a good time to introduce myself.
I’m a dietitian in the US. Although my training is traditional, I myself never have been. I went back to school mid-life for nutrition. But I went through 4 years for that Masters degree with a bias for veganism. (Truth is, whenever I have been vegan, I gained weight. The lower my carb intake, the better my weight.)
My son (26 yo) is very ill with complications of Ehlers-Danlos Syndrome. This is a connective tissue disorder (collagen deficiency), which in him causes outrageous joint pain and chronic fatigue, and other nastiness. I spend much of my time searching for treatment for him – there aren’t many specialists, nor many helpful treatments.
I ran across Dr. Sarah Myhill’s book about treating Chronic Fatigue Syndrome with a ketogenic diet.
Hunh.
I learned about keto in school for children with epilepsy. OK. If ketones in the brain help that neurological problem, then I have to concede that ketones might help other brain problems. Being desperate, I’m open to changing my mind about every nutritional bias I’ve ever had.
So I read everything, listened to podcasts (Carl and Richard are exceptional, so grateful.) Dove deep into my understanding of the biochemistry. And shifted my own diet to keto–I can’t teach my son if I don’t understand it from the inside out. (How that affects me professionally is a whole other, very long story!)
He was willing to try–at first he shifted too fast and was too miserable. I had him add some carbs and back off. He didn’t have enough easy keto foods available to stave off hunger nor enough salt.
I decided to have him try exogenous ketones–I wanted us to see what his brain would feel like with that fuel on board. Because if he feels more alert and energized with some ketones in his brain, we’ll both be totally committed to getting him to nutritional ketosis.
Today, after about a week with exogenous ketones, he says he definitely does feel more focused, less brain-foggy, more alert. He looks brighter more awake to me than he has in a long time.
WOOOOOO-HOOOOOOOO!!!
So, his freezer is stocked with keto meals. Fridge is full of cheese and salami and bacon and olives. I made him fathead cheese-its and Carrie Brown’s breakfast cereal. And bone broth. Because, Mom has no problem spending weekends cooking.
One challenge is that he needs more salt than most people anyway (orthostatic issues). In order to keep up, besides very salty food, he’ll take DripDrop (a very good electrolyte solution) and Saltstick tablets as well.
And I feel this little spark of hope. I’m grateful for everyone who’s posted anywhere about their experience, and for thought leaders and problem solvers who have provided me with the information I need to help my only child reach for a better life.
In gratitude and hope,
Laurie