June is quickly approaching and with that comes the 3rd anniversary of “Paige’s sickness” and the beginning of a medical journey I never imagined. It’s hard to remember what life was like prior to June 2006. Everything was different then, I was a more hopeful and happy father.
I remember the day Paige became sick just like it was yesterday. I was working from home and around 2pm my telephone rang. It was my wife Annette’s Mom saying something was wrong with Paige. I had my shoes on and ran out the door in seconds. I don’t remember the four block drive but when I arrived, Paige was in the back of the ambulance, awake but extremely lethargic. I was in complete shock. A policeman on the scene who I had known since childhood comforted me and told me Paige was being taken to the hospital.
Annette’s parents explained that Paige was cruising along the couch with her great Grandma when suddenly she “rolled her eyes and became stiff and unresponsive.” She appeared to have a seizure.
Before I tell you the story of our journey into the world of the undiagnosed, let me step back and tell you about Paige before her seizure. The day Paige was born, everything was perfect! The sun was brighter and even the New Jersey air smelled good. I had the little girl I always wanted! I immediately ran out and picked up some adorable baby clothes and a few presents for my wife. There were no signs of trouble when we left the hospital. Paige was a happy, smiley and alert baby. She was never sick and our doctor never voiced any concerns about her development.
On June 18, 2006, Paige came down with a cold and her very first fever. As her fever worsened, and approached 103.5, she didn’t want to eat or drink. We took her to the doctor and the doctor mentioned that Paige probably had contracted roseola. The physician told us when her fever broke, if a rash appeared, it was roseola. The next few days were tough and we gave Paige liquids through a syringe and cuddled her day and night. Sure enough the fever broke on Friday and we were relieved! But at 2pm that afternoon, our lives changed forever.
Annette rode in the ambulance and I took my car to the hospital. After answering some basic questions in the emergency room, Paige was given an I.V. and immediately became more alert but was lacking head control. Because she didn’t have a fever, the emergency room doctor was hesitant to declare the seizure a febrile seizure and decided to do a CT scan on her brain. At the time, we thought that the CT would turn out normal.
Unfortunately, we were WRONG. Doctors told us there was an issue in a region of Paige’s brain called the basal ganglia, that could have been caused by her moving during the test or was a sure sign of a metabolic disorder. We scheduled a follow up appointment with a neurologist and went home in a panic.
We were scheduled to go on a cruise to Bermuda but were concerned about Paige. The ER doctor was wonderful and admitted Paige for a video EEG and some tests and we spent 2 days in the hospital (the first of over 24 admissions). The EEG was normal but the neurologist felt the abnormalities in her brain were the result of a metabolic disorder.
The genetics team met with us to discuss further testing and to explain metabolic disorders. One of my first questions was, “does the basal ganglia effect intelligence and speech?” I was told “No” and that basal ganglia effects a person’s balance and coordination. How little I knew then! That answer gave me some comfort, maybe Paige wouldn’t be a gymnast or dancer but could still be the first woman president.
For basic seizure facts and information see: https://www.epilepsysandiego.org/seizure_types.htm
Unexpected Journey – A Father’s Story to be continued.
A D.A.D. and Parent Advocate