Monday 7th March 2016, I arrived at Temple Street Hospital Accident & Emergency with Luke, my 6 year old son after a sleepless night of observing his seizure activity.
My wonderful cousin is a Neurologist in Northern Ireland, and although he treats adults not children had been a fantastic resource for advice in these early days. When I called him on the Monday morning on the activities over the weekend and seizures in his sleep he agreed I should take his straight to A&E, and as a precaution to pack an overnight bag incase he was admitted.
The first A&E doctor who assessed Luke at watched the videos I had recorded said straight out, “those are not epileptic seizures, I have seen children with epilepsy and that is not it”. He suggested Luke seemed very hyperactive and had low attention for a child his age. I did feel very defensive at this stage, I explained that I had an appointment in the Private Clinic the following day, and he said well you wont be admitted here, Luke will be treated as an Outpatient and I was best to go to the planned appointment the following day.
I was not happy with this response, and I said I was very concerned about my sons welfare (terrified of bringing him home for another night of seizures) and I was not happy for this doctor to rule out anything without further investigation. He said he would speak to his consultant (the A&E Consultant) and see what she thought. Luckily this doctor was more open minded, and I later heard from the Neurology team there was just something about Luke’s case which she felt needed admission. We spent the whole day in A&E, he had bloods taken during which he kicked and punched me and the doctor, breaking my glasses in the process, swearing at us – the child was completely inconsolable, I actually sat and sobbed, it was such an ordeal!
Around 4pm a Neurology Registrar assessed Luke and listened to everything I could tell her about his history, the seizures, she watched the videos, and again although his seizures were not “typical”, she agreed he needed to be admitted for further investigation.
I met the Neurology Consultant on the Tuesday morning, luckily I felt that I could be comfortable with him in charge of my sons welfare, he was very patient and I liked his approach. Although Luke wasn’t so sure; by this stage he was so fed up with being poked at, nurses checking blood pressure etc, to my embarrassment the first time Luke met him, he hid under the bed and refused to come out!
He told me they were on the fence about what might be “wrong” with Luke, some of the characteristics of his seizures were more like Non-epileptic events or the alternative was that Frontal Lobe Epilepsy can have a-typical seizure activity. From speaking to my cousin (The Neurologist), I had already researched both these possibilities and of the two my worst case scenario was the diagnosis of Non Epileptic Events. At this stage Luke was having approx. 11 seizures in a 24 hour period, if he was diagnosed with NEE, then the treatment would be Psychiatric in nature with a slow road to recovery, the prospect of him having this many seizures which cannot be medicated as they are not caused by a “physical” problem was terrifying.
The plan was to organise a Video EEG in the hospital and then go from there, with the possibility of a Brain MRI depending on the results from the EEG. Again after researching Frontal Lobe Epilepsy I had read that sometimes the electrical activity of these types of seizures are not always detected if it is too deep in the brain – so again I was very concerned about a misdiagnosis if the EEG wasn’t definitive.
The EEG was an experience in itself! one of the nurses told me that Luke would need to stay in the bed in the Telemetry room for the 24 hour period, in order that he was in the view of the camera should he have a seizure. My jaw literally dropped to the ground and I said the only way he was going to sit on any bed for 24 hours was if he was fully sedated and my guess was this would defeat the purpose!! I suddenly became very nervous at the prospect…
We got moved into the Telemetry room on the Wednesday around 4pm, the Technician came in and went through the process, she needed to glue the electrical probes to his scalp, the power lead connected to a computer and he had a little bag with a small machine (around the size of a Nintendo DS) that all the leads connected into and he needed to wear this bag so he wouldn’t pull the leads out. There was enough length on the power lead that he could go to the toilet but in order to be in full view of the camera he needed to be on the bed otherwise.
Luke totally surprised me this day, he sat as good as gold for the 20-30 minutes it took to glue the probes onto his head, the Technician then put a cap on over the probes to try and keep them in place. Luke then spent the next 24 hours watching movies, playing games and his very kind aunts and uncles sent in a Hulk-Buster toy which he was absolutely delighted with and played with it for hours (he loves all things Marvel Superheroes!).
As Luke was being monitored overnight, the hospital arranged for a Healthcare assistant to sit in the room and monitor Luke, when he had a seizure she needed to press a button which then left a time stamp so the Clinical team knew when to review the electrical activity and the actual video. It was a very long night, and because I knew what was at stake regarding the diagnosis, I was too afraid that the Healthcare Assistant would maybe miss a seizure and so I did not sleep a wink, in nervous anticipation of what the next day would bring, it was a long night with lots of seizure activity.
At approximately 10am the next morning, the Paediatric Neurologist came in and confirmed that the EEG had shown 13 episodes throughout the monitoring, one awake and 12 in his sleep and he was able to categorically diagnose Frontal Lobe Epilepsy. My first feeling was of huge relief, I felt that with a definitive diagnosis as difficult as epilepsy may be, at least we could put a plan in place and start treatment. The consultant confirmed he would now organise a Brain MRI and start Luke on some Epileptic medication straight away, and his first drugs of choice were Trileptal and Frisium.