“This is definitely epilepsy. We need to start him on anti-epileptics immediately.” I still vividly remember sitting in the neurologist’s office hearing that one of our amazing triplets, Jacob, had epilepsy.
We knew this was a risk because he was born with the most severe form of spina bifida, myelomeningocele. This meant that his spine didn’t close fully during the first six weeks of development in utero, exposing his spinal cord to damage. He went on to develop hydrocephalus (“water on the brain”) after his back closure when he was just six weeks old, so had to have a special tube inserted to drain extra fluid that was compressing his brain.
I learnt that being a risk and being a reality are two very different things. As a trained nurse, I had a job that involved being “epilepsy link nurse” before having the kids so I thought I knew enough about it. I was so wrong.
The first thing to hit us was the frequency of his seizures. He’d have numerous every day, simply “checking out” for minutes at a time. He’d stare and become unresponsive (or very sluggish at least) to our pleading voices and touch. Watching a seizure taking hold of your child’s body and brain is a desperately helpless feeling. Afterwards he’d just sleep. It became a cycle of awake, seizures, sleep, seizures.
We were watching him constantly, always ready for the big ones that didn’t even respond to two doses of his “rescue meds”. His meds also took their toll on his beautiful body, causing a horrific widespread rash that caused him even more discomfort.
I became incredibly anxious. I can’t remember him having a full week at pre-school after his diagnosis and that didn’t change in the first term of primary one. I couldn’t leave him anywhere except school, and even then, I had to be close by so I could take him home or hospital if he just didn’t “come back” to me. He couldn’t travel because being in the car seemed to trigger his seizures, so I didn’t feel it was safe or fair to drive him further than absolutely necessary.
It really was one of the toughest times of our lives.
Thankfully, he has since got better seizure control after a lot of “tweaking” and changing his meds. We watched with absolute joy as our bright, bubbly, funny and courageous little boy came back to us day by day. His strength is still building up again after over a year of being unable to do his physio or occupational therapy.
He is incredibly lucky to have a brother and sister by his side cheering him on. They have also been so brave through it all and never complained that Mummy and Daddy spent so much time with Jacob. We wouldn’t have got through without the support of our family and friends who held us up when the constant worry became too much.
It’s still a big part of our lives but we now feel like we can move forwards and out of the crushing weight of feeling all we are doing is managing each crisis!