Birthdays & Butterflies - The First Chapter Of My Son's Epilepsy Story

24/08/2016 11:56

We didn't know it yet, but by Thursday 18th February 2016 my healthy and lively 6 year old son Luke had Epilepsy and was having quite frequent Complex Partial Seizures. We were on our way to the Isle of Man to celebrate my sister in law's 40th birthday.  I had observed some "odd" behaviour Luke had been displaying, namely 10 or 20 second long episodes of; his body stiffening, holding his breath, his face turning red, eyes flickering, a slight moaning noise and then a little giggle and a big wide smile.  I was pretty sure that he was just kidding around and in blissful ignorance was not concerned about anything more sinister.

During the birthday dinner on the Friday night, Luke had one of these episodes at the table whilst I was speaking to another mum (a friend of his aunt), and I asked her opinion did she think he was "putting it on" or had she seen anything like it before.  She mentioned something called Petit Mal, which I had never heard of before, but it was at this stage I did start to think, hold on maybe there is something more here that needs to be investigated.

Over the next week I observed a further 6 or 7 seizures. I spoke with his school teacher who said she had noticed a remarkable deterioration in his concentration and attention since the start of the school term and she had been planning to move him to the front of the class to be closer to her.  Up to this point Luke had met all his developmental milestones and was above average in most areas - described by his previous teacher as a real sponge and everything came easy to him in school. The following day his teacher observed him having a seizure in class, I had made an appointment with our GP for the Friday but I rang up for an emergency appointment and took him that afternoon.

At this stage the GP referred Luke to see a Paediatric Neurologist and I got a Private appointment for Tuesday 8th March for a Consultant in Temple Street Hospital in Dublin.  During the next 10 day period , Luke continued to have in the region of 4-5 seizures per day, each lasting in the region of 20 - 30 seconds.  I had to travel on business to the US (a very tough decision to make, and one I will continue to question was the right thing to do, but as a small business owner I felt I had very little option but to go, as it was one of the biggest events in the business diary.)  One of the most distressing times I have ever experienced as a mum was when I was in a hotel room in Phoenix AZ, on a video call with Luke when he had a seizure, I was screaming down the phone hoping his dad would hear me at the other end (which he did!) but being completely helpless and thousands of miles away, it was a 5 day trip, but felt like a lifetime away from my baby.

On Sunday 13th March, Mother's Day Luke had had a number of seizures, predominately in the evening time - although in great humour, I was becoming increasingly concerned.  In preparation for the appointment with the Neurologist on the coming Tuesday I had managed to capture some videos of the seizures and also had been keeping a detailed diary of when they occurred, how long, what he was doing prior, the nature of the seizure and how he was afterwards.

That night, after I had put Luke to bed, he came back down to the living room around 30 minutes later and said he had had a "butterfly" in his sleep.  To explain, at this stage I did not want to alarm Luke or his sister by using the word seizure or in reality to admit to myself that this could actually be epilepsy; so I asked him to give the episodes a name, and he chose Butterflies.  Coincidentally I later learned that some people who have epilepsy can have an aura which includes a feeling of butterflies in your stomach.

I suddenly realised that I had not even considered that Luke could also be having seizures in his sleep, so that night I kept his door opened and listened.  Around 11.30pm that night I could hear the thrashing of bed clothes (in his sleep Luke was scissoring his legs in and out) and the familiar moaning sound and yes Luke was having a seizure whilst fast asleep, although his eyes were open.  I kept him in bed with me that night (the first of many to come!) and he had a further 4 seizures, all of similar nature; so although Luke had an appointment with the Neurologist the following day, I was too concerned to wait, and took him straight to the Accident & Emergency Department in Temple Street Hospital that Monday morning.

Over the following 9 days Luke was hospitalised, given a Video EEG and an MRI and was formally diagnosed with Frontal Lobe Epilepsy.

For more on Luke's diagnosis and his refractory epilepsy please visit