When my daughter was 10 ½ she had her first episode of status absence seizures, which was misdiagnosed as a condition called “confusional migraine disorder. We did not know it, but this was the beginning of our epilepsy nightmare. She also suffered from migraine headaches, but looking back, I think she was dealing with “feeling bad” from chaining absence seizures.
In February of 2000 she had her first tonic-clonic. From that moment on we began to lose my brilliant, organized, witty, beautiful daughter.
We ended up trying a myriad of drugs and drug combinations, only to have moderate control with lingering debilitating sided effects. Lindsey’s seizures changed and she began to have monthly tonic clonics and weekly drop and partial seizures. At every appointment I would ask, “Could we please try the Ketogenic Diet?” And was promptly told, “No. It will not work and the food is impossible to eat.”
After we had a 18 hour period of what appeared to be a new type of visual seizure, I watched the movie, “First Do No Harm” at the urging of my older daughter. I wept through the entire movie because I could relate to everything those parents went through.
I got on-line and discovered link to Dr. Kossoff. There was a study listed for people 18 years to 50-something using MAD. I emailed him, and to my surprise, got an email back by 6:30 a.m. the next day. We had an appointment with our neurologist that day, so I copied a bunch of studies, and went ready to make an appeal. After the typical questioning, we were offered to start a new drug called Keppra. At this point, I made my case and begged to to be a part of the MAD Study. After much discussion and by God’s grace she gave in to my pleas, not as a neurologist, but as a mom. We took the ball and ran.
Within two weeks my daughter was 85% seizure free. Within three months, and the end of the study she was 90 to 95 % seizure free. We were elated. Thanks Dr. Kossoff!!
Since that time, we have switched to the Ketogenic diet because of a more exact way of measuring food and trying to get a steady ketosis.
My daughter is currently on the drug Zonegran, and the Ketogenic diet (3:1). We are still at about 95% seizure freedom. My daughter has gone from losing all of her academic skills to operating at grade level and above. She is now 20 and doing well. She plays mandolin in our bluegrass band, and designs lovely sterling silver jewelry. Occasionally, she has a few bad days, but nothing like before the diet. I am so thankful that we were given the chance to try dietary therapy.
The Ketogenic Diet is not invasive or impossible. We have been able to come up with some very creative menus using KetoCalculator and suggestions by Beth Zupec on the Charlie Foundation website. Beth, thank you for this opportunity to share our story and for helping us out when we were very scared and without support.
With Warm Regards,