Kristi Dinneen

An atypical day unfolded, when I arrived at the babysitter’s home to pick up my youngest son, Kalen. I entered into a hellish scene that would replay itself over and over for the next decade. Upon my arrival, I opened the door to see my four year old son with his eyes rolled back in his head, obviously confused and totally shocking to my own eyes. As he limply lay in the babysitter’s arms, all she and her husband said was, “Kalen is very sick!” In utter disbelief that 911 was not summoned, I questioned these supposedly responsible caretakers why they hadn’t called for help. They offered a feeble, “We knew you would be here soon.” In sheer shock, I rushed him to the emergency room. He was slowly coming out of this stupor and upon arrival, he was fairly coherent. I searched for head trauma or any kind of clue as to what could have caused such an alarming episode, asking what seemed like a million questions to no avail. The doctors seemed baffled as well.

Countless neurologists and tests later, Kalen was diagnosed with Complex Partial Epileptic Seizures, (thought to be idiopathic; i.e. of unknown origin). This pleasant, blue eyed, blond haired boy would be consumed with “fits” that would evoke terror into even the most stolid individuals. The seizures consisted of something you might see in horror films, not something you would witness in your own perfectly healthy, normal child! The transformation included glazed eyes, stiffened fists, twisted arms and legs, drooling, confusion, lack of thought or communication, dropping to the ground, occasional strange picking motions and clicking sounds. Sometimes blood vessels burst within his cherub face as he succumbed to this evil unknown. Other times, his lips would turn blue, and the fear would twist through my body as if I were going through this heinous hell with him. He would eventually come around, remembering nothing and being overcome with fatigue. Usually two hours of sound sleep would follow. I however wasn’t provided the relief of forgetting. In fact, it consumed and fueled me to find a way to fix this deleterious disease.

Babysitters could not cope and would quit, or after hearing what to expect, quickly refuse their services. Kalen had to be watched constantly, like having a newborn. He couldn’t be left alone. The risk of drowning in the bathtub was too great, so he was only allowed showers. Bike riding turned into a new level of dread. Swimming involved a life jacket ALWAYS. He had to be allowed some normalcy…but there really wasn’t any. Who would have thought that everyday activities would be looked at with such apprehension? "Overprotective" became my middle name..."Stress", my first name.

Endless combinations of medicine, numerous trips to hospitals and many seizures later, the fear wouldn’t go away. Nothing helped. Sometimes he would go a few days without a seizure and sometimes he would have seven or more a day. How was this little boy plagued with what seemed an insurmountable problem ever going to have a normal life? Or for that matter, how would the rest of the family? His first year of school was approaching, as was the overwhelming anxiety of putting him in an unfamiliar atmosphere with strangers that were unprepared and uneducated on epilepsy. By some kind of miracle, I did indeed find a compassionate soul that was up for the challenge of babysitting Kalen and his older brother, Levi.

I had to instruct kids, teachers, nurses, friends, babysitters, any and all that would be in contact with Kalen, what to do in the event of the inevitable seizure which was to: gather around him, make sure to help him to the ground, because he was definitely going to end up there! Don’t let him hit his head, try to get him on his side, never put anything in his mouth, and just stay with him till he comes out of it, (usually within a couple minutes). When he was in school, the nurse would take him to her station after the seizure where he would sleep until the babysitter or I could pick him up. This went on for years while I researched and tried experimental drugs, even diets, that might help control the seizures. One of the experimental drugs he was on had horrific side effects that included dramatic weight loss and bruising over his body and swollen lymph nodes. I weaned him from the drug quickly due to those side effects and later read that the same drug had actually been responsible for the deaths of some who took it. After reading that information, I lay fetal for four hours sobbing uncontrollably wondering what was going to happen to my baby boy! The future looked bleak, but there was always hope and a knowingness that we would get through this.

In 1995 when Kalen was twelve years old, I learned of a strict diet that had helped some children halt their seizures. The Keto Diet, if followed precisely was being successfully used on a handful of patients. Overjoyed with the possibility of a new option, we made plans to admit Kalen in the Johns Hopkins Hospital in Maryland. While there we learned that Kalen was in the 10% group that could possibly be controlled with brain surgery. That was the ultimate last resort and not even close to being an option in my mind at the time. After Kalen’s discharge, we followed the diet meticulously for a month. The Diet helped many but not Kalen, so onward we went with more futile attempts at controlling this insidious disease. Kalen was and is, extremely bright, but the seizures were causing major memory lapses. The drugs would leave him sullen, unmotivated, or overly hyper, just unreasonable extremes. As time went on and he remained uncontrolled, I worried about him not being able to drive or hold a job. College for him wasn’t even on the radar due to the struggling in school, the progression of the disease and the side effects of the drugs. When he was 15 years old, I finally reached a point where I had to entertain the brain surgery option. This was a last ditch effort to give him the possibility of a normal life! After much discussion and research, we ultimately chose to give it a chance.

A new set of hospitals, a new set of tests, and a new set of doctors and we arrived at…SURGERY DAY. April 6, 1998. Many family members were present from different cities and states for support. Kalen hardly seemed fazed and didn’t appear to need them. He firmly believed that this procedure, a “right temporal lobectomy” was the answer and all would be well. I, however needed all of them. The potential complications that brain surgery offered were staggering - loss of speech, loss of memory, loss of sight, loss of Kalen. The concerns were formidable. An intense, anxiety ridden, ridiculously long day and then they rolled him out. Alive, coherent and hopefully the same Kalen minus the disease. And then the wait...

First hours, then days, even months went on without seizures! Could it really be true? Kalen remained on medication for two years after surgery as a precaution. When he was completely weaned from the intense drugs, he appeared to emerge from a fog and his intellect that was clouded by the drugs returned. He got his driver’s license, graduated from high school in 2001 and got a job. Unbelievably, he was having a normal life!

After High School, he attended the Electronics Institute as he showed a great interest in computer information technology. Through sheer determination and hard work, he graduated with a 4.0 GPA and top of his class, Summa Cum Laude with an Associates of Occupational Studies in Computer Programming Technology.

Kalen continued to pursue an academic career at the University of Kansas majoring in Computer Science. He was completely unprepared for the challenging courses that awaited him at KU. (He did not take any college prep classes in High School). The math requirements proved to be a little too challenging so he switched majors to his second interest; History with a focus on China. Later he added Chinese Language & Culture as a second major. He worked full time throughout his college years as well as carried a full schedule of classes. Kalen’s diligence earned him the accomplishment of graduating ten years after surgery with double Bachelor degrees in History (with department honors) and the second degree in Chinese Language & Culture. Also to his credit, he added fitness to his life’s program and lost eighty pounds through diet and exercise which is a tremendous achievement he continues to pursue. During his senior year, he had the opportunity to travel abroad. He visited Hong Kong which complemented his study of Chinese Culture.

He is currently working as an Intelligence Analyst for the Department of Defense in Washington, D.C.

This journey continues to be astonishing!

Extreme respect and thanks must be given to the surgeon. He gave us all our lives back. There simply aren’t words for that!