Mason was diagnosed with epilepsy three years ago.

His mother Nicola shares how he got diagnosed, the challenges he has faced and how Epilepsy Scotland’s Purple Pandas group has helped him.

Following four focal seizures, Mason (aged nine years old at this time) was diagnosed with epilepsy three years ago.

His childminder noticed the first seizure and called for an ambulance. Mason was admitted to the hospital, and we were told to bring him back if this occurred again.

A few weeks later, it happened again. We were given an appointment with one of the consultants, and he requested that we videotape the seizure if it reoccurred again.

Three seizures were captured and forwarded to the epilepsy team.

Following the review of the videos, we had another meeting with a nurse from the epilepsy team and a neurologist.

We talked about the episodes and the next steps, which included Mason getting an MRI and an EEG, during this appointment.

At this point, Mason was experiencing focal seizures, according to the neurologist, but they wanted to wait for the test findings.

Diagnosed with focal seizures

Mason was diagnosed with focal seizures and put on medication after the results showed that he did indeed have seizure activity on his brain.

Mason’s seizures developed into focal and generalised seizures after six months.

When Mason had his first seizure, we assumed it was an isolated incident and that he was suffering from a high temperature / virus or stress, but as they became more regular, it became clear that this was not the case.

Due to our first aid training, my partner and I were both aware that it was epilepsy before it was officially diagnosed.

We both, to be honest, didn’t want Mason to go through this and hated the idea of it.

Mason was aware of what was happening because he had attended every appointment.

Mason was given a level-headed explanation of everything by the neurologist. Mason’s approach towards his epilepsy has always been “I’m good, you have to deal with it as I can’t remember anything”.

However, he claimed that he was embarrassed after having his first generalised seizure in school and that his friends were questioning him a lot when he returned.

At this point, we thought Mason’s confidence had been shaken, and he had become quieter.

Nevertheless, Mason’s school has finished its training on epilepsy and has given talks on the condition, which is fantastic because there are now a few children with epilepsy in the school.

Protective

We are perhaps overly protective of Mason since we are parents of a child with epilepsy. We routinely check in on Mason because we get anxious if he is not with us.

Also, we are constantly waiting for that phone call to inform us that he’s had another seizure, even when he’s with people we trust.

In saying that we will not allow Mason to be held back or use his epilepsy as an excuse for not doing anything.

Mason still attends his sport clubs (dodgeball, tennis, and rugby).

As a precaution, we have a camera in his room and a sensor mat on his bed that connect to our phones and a pager.

Additionally, since he is becoming older and wants a little more freedom, we are looking into an epilepsy alert watch for him.

Purple Pandas

Mason’s youth group, Purple Pandas (Epilepsy Scotland), and the hospital’s epilepsy team have provided us all with unimaginable support.

The Facebook groups for parents of children with epilepsy and Epilepsy Scotland have also been a huge help, as has the knowledge that we can talk to someone at any time and that you’re not alone in this.

Raising awareness about epilepsy can only be beneficial because it can impact anyone at any point in their lives.

Hopefully, this will help people feel less afraid of it because they know that there is always support and someone to turn too.

My advice to any parent whose child has recently received an epilepsy diagnosis is that, although you will feel very anxious and afraid, you will overcome this with the right information and support.

Talk to your child about everything at their level of understanding and let them know that many children have epilepsy.

Mason was ecstatic because “everyone was just normal” during his first Zoom meeting with the Purple Pandas (Epilepsy Scotland).

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.