Project Seizure-Freeedom

I have found that through the most difficult and painful times in my life is

when I have grown the most and God never left me.


He hasn't left you either.

Showing posts with label Mayo Clinic. Show all posts
Showing posts with label Mayo Clinic. Show all posts

Monday, March 14, 2011

Development of The Ketogenic Diet

I've heard it said that history is one of our best teachers. This realization hit hard for me while doing research in a hospital library. Tears blurred the pages and painful emotions tore at me from the deadly diagnosis the neurologist had announced earlier. I was desperate to save my child. Foreign medical jargon and terminology beyond my education inked the pages, but even so I understood enough to know we hadn’t been given all the treatment options. Why?

At the library that day, I read about a diet, developed in the 1920s, that stopped seizures in children. Dr. R.M. Wilder, a diabetologist, and his team at the Mayo Clinic had been working to stop seizures in diabetic children. This research had actually started four hundred years before Jesus walked on Earth by a physician named Hippocrates. Hippocrates believed in healthy eating to heal our bodies. His research on epilepsy included dietary intervention and fasting for kids with seizures. In addition to that, a story in the New Testament, chronicled by Matthew and Mark, told of a boy with epilepsy who was healed by Jesus. "This kind of healing comes from fasting and prayer" (Mark 9:29 NIV).

Inspired by the studies and writings mentioned above, Dr. Wilder prescribed fasting for diabetic seizure children. Do you think he was surprised when many children stopped seizing? It's just my hunch, but I think he expected it. Who wouldn't if the history is taken seriously. Either way, Dr. Wilder then took chemical components in the blood and urine and formulated a diet that simulated the same. In other words, they developed a diet that mimicked fasting--and it worked. The diet was named Ketogenic after the ketones we measure when our body burns fat. The diet was used with great success until the 1950s when anti-seizure drugs were invented, then became prehistoric in a sense. Today we know that thirty to forty percent of patients don't respond to medication. Shouldn't we question whether we should be taking a look back in time?

The answer to the above question of why doctors don't always prescribe the diet is alarming:  many simply don't believe the diet works. Some cite it's too complicated (a diet--too hard?). Others simply don't know much about it, or they simply don't have a dietitian trained in administering it. For our family, we felt as though information had been withheld and our daughter's life had been put at risk by not being informed of all the treatment options.

During a speaking event in Madison, Wisconsin, two women marched in with copies of Good Morning, Beautiful tucked in their arms. As tears streamed down one of the women's cheeks, she took my hand in hers and told me how proud she was of me. I was certain her grandchild or child was on the diet, but I was wrong. "I was the one," she exclaimed. In the 1950s, when all medications failed, she was put on the ketogenic diet and it saved her life. She reminisced about her doctor, stating he was old enough to remember the diet's discovery and smart enough to use that information to spare her life.  

Monday, June 21, 2010

The Enormous Grey Building

Tomorrow we have a book signing at the Barnes and Noble store in downtown Rochester, Minnesota. Not long after arriving in town, the kids and I took a leisurely walk near the Barnes and Noble store which is a block from Mayo Clinic. As we passed by the entrance to the Kahler Hotel, my mind flashed back to the first time we came to Rochester for Mayo Clinic and  parked in front of those double doors ten years earlier. Turning toward the Mayo Building that towered across the street, I raised my hand to block the sun and looked up. That's when I began telling the story to the kids as though they had never heard it before. As I talked, Mathew lifted the camera to his eye and snapped this picture. 

In Chapter nine of Good Morning, Beautiful, I wrote about that day and thought since we had this picture, you might appreciate reading about that visit for yourself.

Excerpt from Good Morning, Beautiful:  

Warm air from a clear July day brushed my face as I bent my neck back to scan the enormous grey building, home to
Mayo Clinic. The clinic hovered over us eclipsing other buildings

as we stood across the street near the entrance of our hotel, freshly arrived from a two day trip. Larry’s arms wrapped around Christina, fresh out of her car seat, the strap of a diaper bag was slung over my shoulder as I held onto Mathew’s hand. We all looked up.

        The gigantic building rose into the cerulean blue sky, reminding me of the Sears Tower. Gigantic slabs of battle ship grey marble formed parts of the exterior, and a massive bronze sculpture of a man, arms stretched upward, evoking the humaneness of us all protruded from the exterior several floors up.

       A uniformed bellhop came rushing out to greet us. “Can I

help you with the luggage, sir?”

       “Ah—yes,” Larry answered shifting his attention away from

the building.

       “It’s quite a sight, isn’t it?” the bellhop said smiling, “You here

for the clinic?”

       “Yes, we are.”

       Larry and the bellhop began emptying the van. Luggage, baby bottles—some needing to be washed—a box of carbohydrate free formula and another with glass bottles of microlipid (fat emulsion). They clinked together as they were lifted on to the luggage carrier. When the men finished, only two car seats and Cheerios scattered on the car’s carpeting were left.

       Burgundy and gold carpet rolled across the reception area floor distracting the eye with its paisley design. A lingering smell of old cigars and air freshener mixed with newer carpet and filtered air. This hotel, although beautiful, seemed hardly the place for two young children, but we ignored it— it was the clinic, not the hotel, and relief from the seizure storm that had brought us to this lobby.

       Morning arrived too soon, Larry and I, exhausted from the long drive and months of seizures, could have slept longer. But we pulled ourselves out from the covers and left the hotel soon enough to eat breakfast at Mayo’s cafeteria.

       Inside the building, we stood looking like tourists until a man dressed in a navy colored suit with a Mayo Clinic badge greeted us.

       “Can I direct you to where you need to go?”

       I couldn’t help sensing a calm feeling I had come over me upon entering the building. The feeling was more than a reaction to the spacious room, organic curves and clear glass ceilings. It was a feeling that this is where we are supposed to be.

       At the registration desk we gave our insurance information and filled out necessary paperwork before walking toward the elevators for Christina’s first appointment. High ceilings, marble floors, bronze door handles and works of art—this was nothing like we expected. Beauty graced every corner, from blown glass artwork to ancient artifacts behind glass.

       Nearly six months of seizures, tortuous needle pokes, debilitating medications, and a life-threatening misdiagnosis, had brought us here. The 1,200 mile trek seemed halfway round the world in our new azure minivan by the time we reached Rochester. We traveled on hope—hope that inside this mammoth grey building we would find the right care for our daughter, whose life was being ripped away by a tornado of relentless seizures. We wanted someone to help us stop this tornadic villain, render it weak and unable to continue. Could this enormous grey building hold the key to seizure freedom? We hoped it did—everything was at stake.