Abigail's Story
Abigail seemed like a typical 1 year old at first glance, but there was something a little bit different about her. Just a few days after her first birthday we began a journey we will never forget. It all started when we were visiting her pre-school. She was just learning to stand and hold on to furniture, and I was showing off this new skill to her teachers when all of a sudden she fell straight backwards and took a good knock on a barely padded floor.
I scooped her up and was consoling her. She was rather upset and seemed to be losing her breath. Suddenly, she made a short grunt that I may never be able to describe and started what appeared to be a seizure. Her tongue was smacking and her arms and legs were shaking. Having some knowledge of seizures, I quickly laid her on the ground and told the director to call 911. Abigail came to before the ambulance arrived, but really wanted to go to sleep. We took her to the hospital and she had a head CT to make sure the bonk on her head didn’t cause any brain injuries. A few hours later, she was released with no evidence of long term damage. We all chalked this up to be a side effect of the knock on the head and the doctors convinced us it would not likely happen again.
Almost exactly one month later, Abigail was sick for a week. She would throw up once a day, and then be fine for the rest of the day. I kept her home because she wasn’t eating well, and at the end of the week I decided to take her with me to check in at the office. She was playing quietly on the floor and the next thing I knew, she was seizing. I waited for it to end and picked her up and called the pediatrician. While I was waiting for the doctor to get on the phone, she started another seizure and the doctor told me to hang up and call an ambulance. Abigail had two more seizures that afternoon with all the doctors watching. They admitted us, and we spent the next three days evaluating Abigail for anything they could think of. The neurologist concluded that she should go on seizure medication, but we resisted because we weren’t convinced that these would continue to occur. We agreed we would keep diastat nearby in the case she could not recover from the seizures, but otherwise, we would wait to see how the tests turned out.
A month later, Abigail had another seizure following a fall while she was running down the hall. We weren’t even sure she hit herself on anything, but that was the trigger. This seizure was single event that lasted a few minutes followed by a long nap. A week later we had a scheduled appointment with a different neurologist. We told him about the latest seizure and he ordered another EEG since the first was done with medication in her system. We kept her up all night (per doctors orders) so she would be sleep deprived and make it through the test. There were no abnormalities, and no clues as to why this kept happening. We were baffled.
Abigail had a seizure every month on nearly the same day for the next several months, and each one was triggered by a fall, an illness or an emotional struggle, all very similar. She would make the notorious gasp, her face would be bluish, and she would begin what looks like a grand mal seizure. We would talk her through it and after she would take a long nap. She would be starving afterwards, and spend the next several days re-learning motor skills she knew the days before the seizures. We think this was because her muscles expended so much energy in the seizures that they just didn’t have the strength to keep up with a toddler’s development schedule.
We began to think a seizure was around every corner particularly when the 17th came around. This was about the time we found STARS. We learned so much and the descriptions of Reflex Anoxic Seizures just made sense with what Abigail was going through, particularly since most of her seizures seemed to be triggered by events. We immediately emailed STARS and asked for more information. We took our new information to our doctors who agreed with the similarities (though they still felt this was triggered by behavioral problems like breath holding spells). They assured us that she would not face long-term damage from these events. We hoped they were right.
Over the next year, Abigail’s seizures decreased and by the time she was 2 she would have them 3-4 months apart. The seizures were very rough and long lasting, but they didn’t happen often. They seemed to occur when she lacked sleep, was sick or had been out playing hard and wouldn’t stop to eat. Basically we learned when her body was weak, she seemed more prone so we started making sure she was fully hydrated, well rested. Now age 6, the last seizure we know Abigail had was after she fell off her bike when she was 4 ½. We also learned that if she is startled by a bump or fall, we scoop her up and make sure her body is as level as possible which seems to stop any events so we were able to stretch the gap some.
Over the years, we have visited neurologists, cardiologists and developmental pediatricians. While the seizures seemed to have run their course, Abigail was diagnosed with sensory processing disorder and has had a hard time focusing in school. Do we think there were long-term impacts to the seizures? Hard to say. Do we think she has outgrown this? We are afraid to let our guard down because every time we did before, she would have another one. She is a risk taker, and should have a frequent flyer card for our local ER with her seizures, a broken collarbone, and two major cuts from falls, one of which granted us a ticket through the Australian medical system.
We continue to watch her grow and overcome the challenges her body throws her. She is one of the happiest kids I know, and is stronger for what life has thrown her, or at least strong willed!!!