W is a three year old boy. He's a car loving explorer who loves to go on frequent adventures and to eat as much apple crumble as possible. This moment is written by his mum Clare.
My son was diagnosed with epilepsy in October 2018 after having four seizures (two diagnosed as febrile). He has suffered with more seizures since, and we are now on the journey of medicating and hoping some normality – for us – may return.
Let’s start at the very beginning…
W had two febrile seizures when he was around 18 months old. He had tonsillitis at the time and we were told it was a normal reaction for a child who has a high fever.
Fast forward to this year. W has now had two convulsive, tonic clonic seizures, as well as numerous absence/unexplained episodes.
I remember being in the neurology waiting room. I honestly believed (even after one convulsive) they were going to send us home and say ‘come back in six months’, but they didn’t. They diagnosed W with epilepsy. I cried.
I couldn’t believe it. I still thought they’d made a mistake. I remember speaking to the epilepsy nurse and considered not putting W on medication. I found the possible side effects of Sodium Valproate daunting. Surely he didn’t need it? Nothing had actually ‘proved’ epilepsy.
After this, we visited hospitals for numerous tests. MRI’s, EEGs, ECGs, bloods. Then another convulsive seizure hit two days before Christmas. Yet again we were in hospital. It really hit me then. He was epileptic and this was the start of a new chapter of our lives.
We started his medication on Christmas Eve and so far, so good (apart from the tiredness and over-eating). He’s had one absence seizure.
W has since had another EEG appointment – but this time sleep deprived.
W’s diagnosis has inspired me to begin writing a blog for my own well-being and as a way of opening a support network, after I realised that there were not many (if any) in my local area to support children with epilepsy and their parents/carers. If you’d like to join me you can find E-word on Facebook or Twitter. Alternatively, you can join and follow my blog at www.e-word.co.uk.
Have you experienced something similar? Tell us your story below.