Our Journey Begins

Over the past several months we have noticed periods where Delaney would not respond to a question for several seconds.  When she finally did respond it was always with a comment about her stomach hurting and a deja vu type of feeling.  In April we attended my cousin's wedding and we counted 7 "episodes" over the course of the weekend.  Several of these were severe.  They always started with her complaint of stomach pain and and the severe ones included the tightening up of the muscles on one of her extremities.  I also noticed an aphasic episode where she tried to tell me her foot hurt and instead she said her "flavor" hurt.  These all subsided after a few seconds to a minute. She had no recall of the events during her seizure but always could tell me after that she had one.  We began to track these upon our return home.  At this time we were beginning to think they were seizures, but still we did not know.  Interestingly enough, I was out of town in May and watching something on Netflix and they were describing symptoms of deja vu as a symptom of absent seizures (formerly know as petit mal seizures).  This is when we began doing research and decided that she was in fact having absent seizures.  In June we attended one of our college student's wedding out of town and again Delaney had multiple severe seizures throughout the weekend, so we began to video several of the episodes.

On June 25th we began the process of diagnosing her seizures.  We met with a new pediatrician Dr. Rebecca Riser and told her our concerns.  She gave Delaney a clean bill of health (besides the seizures) and referred us to a neurologist.

One week later, July 2nd we met our Scott & White neurologist, Dr. Kokash. He is a quiet man who wrote down her case history and listened to all of her symptoms.  We then showed him the three videos of her seizures.  His demeanor immediately changed and he diagnosed her with complex partial epilepsy.  He stated that her head turns to the left during the seizure indicated "something" on the right side of the brain was creating extra electrical activity.  We had not realized until then, that when Delaney's seizures included a head turn, it was always to the left.  He stated that "something" could be a genetic abnormality, brain trauma, an infection, cyst or tumor.  He said we needed an EEG as soon as possible.  If the results were normal, then we would begin medicine and monitor her progress.  If the results were abnormal then we would need an MRI to determine cause.  We returned the next day on the 3rd to the Scott & White main campus for the EEG.  The whole family came, but only one of us could go back with Delaney.  She would have a series of tests with flashing lights and then a period of one hour of monitoring and they would prefer if they sleep.  (My children do not nap, so we began to pray over her sleeping - and kept her up late the night before and woke her up early the next day).  God is good, after the initial flashing lights and rapid breathing tests, Delaney fell asleep almost immediately and stayed asleep for the remainder of the EEG.

All hooked up.  It will take some washing to get the gel out of all that hair.

All wrapped up, ready to go.

ALL her hair mixed with ALL the wires.

We were told we should have results the next week.  So we went to the lake with our friends for the July 4th weekend.  Everyone had a blast, but we had to keep an eye on Delaney being around the water.  We were informed of seizure precautions and could not leave her unattended in the water.  While out on the lake Delaney did have one significant seizure, but God protected her and it was right after she climbed onto the boat after being in the water swimming and playing most of the afternoon.  We decided to call it a day after that.