My name is Dawn Iversen and I have a child with Myoclonic Astatic Epilepsy aka: Doose. Our nightmare began on April 19, 2009 when our little guy, Luke was just 2 years old, almost 3 in July. Luke started with one Tonic Clonic, aka: a Grand Mal, that lasted about 4 minutes, ambulance took him to our local hospital, Centegra in Woodstock. 3 days later, Luke slipped into an almost continual seizure and he was admitted to Lutheran General Hospital in Park Ridge.
After a long 7 day stay and 2 medication failures, doctors finally found a third drug that worked for Luke and sent us home. After only a week at home and Luke in a “zombie-like-state”, the meds stopped working yet again. Helpless and hopeless, with seizures happening at the amount of 50 to 100 a day, our long epilepsy journey, with these terrible, terrible demon’s that were taking over my baby was just about to get worse.
So, we found a new hospital, RUSH Medical Center in Chicago and add more and different meds, a biopsy, a spinal tap and a boatload of blood draws, more MRI’s, more EEG’s and now a son who no longer is the boy from a month ago, Luke continues having upwards of 500 to 700 seizures daily, nothing is helping.
It was August when we packed up our truck and the entire family (including the mother in law) and headed to Cleveland, The Cleveland Clinic. It was an amazing place, really a city within a city and we were excited this was going to work for Luke. We wanted brain surgery…..NOTHING less!!! (…..brain surgery??..what was I thinking!!!) We met with our team of Neurologists and Epileptologists and pleaded for brain surgery and Luke to come home, out of this drug induced state that the meds were causing. After MORE tests, bloods draws, EEG’s and numerous days in the hospital, we finally get the answer we did NOT want to hear: “We are sorry to inform you, Luke is NOT a candidate for brain surgery.”
DEFEATED. EMPTY. LOST.
We ask “What now?” This is no life for our boy…any boy. Doctors said that they had one last resort and it was a diet, known as the Ketogenic Diet that could possibly help with no guarantees. I had remembered a woman from an Epilepsy Support Group Meeting in Crystal Lake mentioning something about her daughter on this same diet and that they achieved “seizure-freedom” in a few short months. While in the hospital, I researched this diet and found the Charlie Foundation and I am proud to say, “I currently am a mother of a Keto Kid!!”
We started the diet at Cleveland Clinic on August 31, 2009, when just days before Luke was recorded having just under 1,000 seizures in a day to approximately 30 seizures on the first full day of keto. Two days later, we were transported by ambulance back to our home hospital, RUSH in Chicago and remained there for an additional 10 days. Luke has been seizure-free since December 19, 2009, is currently on the Ketogenic Diet with our current hospital Children’s Memorial in Chicago and Luke has been weaned off all anti-convulsant medications since October, 2010.
MY SON LUKE IS BACK, WHAT A MIRACLE!!
Luke’s brother, David, wrote a book titled, “I Wish I Were Sick”. This was his 1st grade writing project! David beautifully expresses the many complicated feelings a young child may feel when the effects of epilepsy impact their sibling and entire family.
Copies are available in our keto store and 100% of the proceeds support the Charlie Foundation.