Laura joined the Shape Network to help ensure that parents of children with additional needs are better represented in identifying key areas of research. Thank you to Laura for sharing her daughter’s story.
My name is Laura and my daughter, Alex, (then aged 7) was diagnosed with childhood epilepsy with centrotemporal spikes in March 2020. A few weeks earlier she had a tonic clonic seizure during sleep, this was our first experience of epilepsy. The seizure was prolonged and she was in convulsive status epilepticus. When paramedics arrived, they gave her some emergency medication (in this case buccal midazolam) to stop the seizure.
The first time we saw Alex have a seizure was a terrifying experience. We didn’t know what was happening, if the paramedics would be able to help her or if she would suffer any long-term effects (she hasn’t).
Unfortunately, on New Year’s Eve 2020 and despite being on anti-seizure medication, Alex had a further seizure requiring an ambulance and she was again given buccal midazolam by paramedics.
Following a change in anti-seizure medication, Alex’s seizures are now better controlled and while she does have breakthrough seizures, they are much shorter and, since then, we have been able to manage them ourselves.
A few weeks after Alex’s initial diagnosis, I started a new job as a data analyst for West Midlands Ambulance Service (WMAS). It has been WMAS paramedics who have treated Alex’s seizures on the two occasions she has required an ambulance. As part of my role, I work with the WMAS research team, and this is how I became involved in the Shape Network. I was linked in with the Shape Network after providing some data on administration of emergency medication for paediatric seizures, just like Alex had on these two occasions.
Following this, I have also become a patient and public involvement (PPI) lead. I hope to use my lived experience to make sure that parents’ voices are heard and their views shape paediatric epilepsy research right from the outset.
One of the most difficult things I have found as a parent of a child with epilepsy is how helpless you can feel, especially when their medication is not controlling their seizures and you are trying to understand why. Every breakthrough seizure can feel like a setback.
This is why I wanted to become involved in research. My hope is I will be able to contribute to something that might make a difference for my own daughter and other children like her. As Alex also has additional needs aside from epilepsy, I feel it is particularly important that families like mine are involved in research, as patients with additional needs are typically underrepresented. It is only through research that we will find the best treatments and improve outcomes for children and adults with epilepsy.
