Our story begins when Thomas was 9 days old. He was born 6 weeks early and everything was ticking along smoothly while Thomas was staying in the NICU.

At 9 days old, he was moved to the intensive care part of the NICU to receive regular doctor check ups as well as a 1 to 1 nurse ratio.

He was moved there because he had an unsettled night, was not tolerating feeds and appeared jittery. When I visited him that day it was obvious to me that something was terribly wrong. His body was involuntarily, repeatedly tightening and releasing. It looked to me to be a tonic clonic seizure. I remember his cry sounded pained and muffled. It was a frightening sound to hear. He was no longer responsive to me like he normally was.

We were able to find out within the next day through ultrasounds and an MRI that Thomas had suffered a Grade 3 intraventricular hemorrhage with the bleed occurring in two areas of the brain. It was termed severe. The seizures were a result of the brain bleed and so the doctors could only manage the seizures while waiting for the bleed to stop, resolve, absorb, who knows? I’m still unsure myself.

Thomas was hooked up to the BRAINZ monitor for a couple of weeks, heavily sedated from a cocktail of antibiotics and anti convulsants. Eventually the seizures became less and less. The medications were gradually weaned away and this is when we started to see Thomas slowly become more alert each day. We had become so used to seeing him lying there peacefully still so when he started to move a leg or arm or open his eyes it was a wonderful feeling. I remember hearing him cry and thinking how beautiful it was. Thomas had no more seizures for a month and was then weaned off the last anti convulsant.

Epilepsy is a sneaky, sometimes violent or quiet destroyer.

It had managed to force its way back into our lives, undetected at times. From Thomas having blank stares, to trembling lips, which then graduated to non-responsiveness and tremors in the arms and legs did we realise what was happening. After 3 hospital stays over a period of a month, Thomas went back on an anti convulsant. Within 2 days, the seizures had stopped. This led to a referral for an EEG and Pediatric Neurologist. His EEG confirmed that he did indeed have epilepsy. Was I surprised? No. It was a relief to know what was causing this and that we had made the right decision to medicate and thus control the seizures.

Unfortunately Thomas has Cortical Blindness and Cerebral Palsy and so this means that his body does not have the appearance of fluid, controlled or coordinated movements. He began making unusual, repetitive spasm like movements at around 5 months old. He had a couple of episodes of these over a two day period and I had no idea what to do. He appeared content and happy during these episodes. It was bizarre!

Following the episode, the second day, Thomas began to do that familiar body tightening and then releasing motion. His cry was not like any cry I’d heard before. It was a deep, forced groan followed by another panicked cry. One ambulance ride later, we found ourselves in resuscitation. Thomas, sedated. All too familiar. That feeling of helplessness, worry, fear, and confusion all over again. What is happening to my little man? I thought, give this poor boy a break! It’s not fair! Why me? Why him?

The following day we found out he had a fairly rare kind of seizure disorder called infantile spasms or West Syndrome. It has a poor prognosis and the treatment includes intensive rounds of steroids resulting in poor side effects, for example; immuno-suppression and insomnia. Again, epilepsy has it’s way of sneaking itself back into your lives and leaving you fearing the worst. We were fortunate to have intervened early enough for treatment. Over a month later, he was spasm free.

It has now been 6 months, and he is still spasm free.

We watch him like a hawk because up until 5 or 6 years old, he can relapse. He remains on anti convulsants and at a much higher dose too. He sees his Pediatric Neurologist regularly as well as repeat MRI’s and EEG’s. We need to carry a rescue dose of Midazolam in case he has a seizure. Anyone who cares for him needs to know how to facilitate the medication. Having a plan is part of the epilepsy package. It’s important to know what and how to react. But often times, although I am as prepared as I can be, I know that the fear and shock can have a paralyzing effect. I am thankful that we have a form of medication that can control our boy’s epilepsy for now.

Being a parent of a child with epilepsy is at times a lonely, frightening, helpless place to be. It is a place that no one wants to visit. Since his infantile spasms successful treatment, we have seen an improvement in his development such as giggling. What a joy to hear him share his happiness!

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