This week we are supporting National Epilepsy Week. Our Group Billing Manager David Barnsley-Parsons has first-hand experience of epilepsy, through his daughter Harriet. He kindly agreed to answer some questions about their story.
When Harriet was around 10 months old, we started to have concerns about her development. She was missing milestones and seemed to have plateaued in her development. After conversations with Community Paediatrics and several blood tests later, Harriet was diagnosed with a genetic disorder. The type of disorder she has is completely unique to her, caused by an unbalance in genes on chromosomes 9 and 10. Whilst very little is known about the extent to which this will affect her, the genes involved are linked to mild to moderate learning difficulties and global development delay.
As part of the investigation process into Harriet’s genetic disorder, an MRI scan of her brain was carried out and this highlighted a number of changes which we needed to be aware of. One of these made her more susceptible to developing epilepsy, however, it wasn’t until she was 2.5 years old when she had her first seizure.
Harriet’s seizures are prolonged (around 15-20 minutes each in length) so after her first episode, we were given rescue medication to administer to her after 5 minutes of the seizure. After her second episode, preventative medication was started. To date, she has had 4 prolonged seizures in 8 months. Each time she has a seizure it involves an ambulance trip to hospital and monitoring to make sure she is recovering from the episode as expected and then a review of her medication dosage. She is very lethargic after a seizure (in part due to the rescue medication administered) and she will often then miss the next day’s activities. She is kept under regular review by Neurology and Community Paediatrics.
Harriet’s seizure to date have happened whilst she is asleep. Which adds another layer of worry around monitoring her, especially through the night. It’s also hard as seizures come without warning and there’s no predicting if and when the next one will be. You can’t wrap her in cotton wool, but equally it’s something always at the back of your mind.
After Harriet’s first seizure, we were scared and unsure that what we were doing was right for her. We didn’t even know how long a seizure lasted for, how long was too long and at what point we had to call an ambulance. Now with the support of Roald Dahl nurses, we feel informed, reassured and empowered to make the right decisions to ensure the best outcome for Harriet.
We were referred to the epilepsy specialist nurses at Queen Alexandra Hospital, Portsmouth (funded by Roald Dahl) in August 2021. It was after we had received the results of the MRI scan, so we were on the lookout for signs of seizures and Harriet had what is described as an absent seizure. It only lasted a matter of minutes, but we alerted her Paediatrician who put us in contact with Becs (Roald Dahl epilepsy nurse).
She contacted us within a number of hours, talked through the episode Harriet had and gave us lots of information about what to look out for and how to manage any seizures. When Harriet had her first prolonged seizure, Becs was notified by the hospital and she was in contact with us directly within hours, getting plans in place for any subsequent episodes.
Becs and Liz (nurses) have been amazing at helping us as parents feel slightly more in control with what is ultimately an out-of-control experience. They are always notified after Harriet has a seizure, and within hours they are emailing us to advise on any changes to medication dosage and requesting this from the GP. On one occasion Harriet had a seizure in the early hours of the morning, but we weren’t discharged until lunchtime the following day. By the time the consultant visited us in the morning to discuss next steps, we had already had a conversation with Becs and agreed the next steps with her medication which ultimately led to a (slightly!) speedier discharge from hospital.
Becs and Liz are always on hand to answer any questions we have about Harriet’s epilepsy. We’ve recently had difficulty obtaining Harriet’s usual brand of medication, but one phone call to them and we were reassured about what alternatives there were.
Whilst it’s never going to be easy as a parent to see your child having a seizure, knowing there’s a plan in place to deal with it, and to follow up on next steps afterwards, helps us to know we’re doing all we can for Harriet in that situation.
We’re learning with epilepsy (and her genetic disorder in general) that once you get a diagnosis, that’s when the real journey begins. We learn more about Harriet each day, what she will be capable of and what support we need to put in place for her. As she grows, her medication will need to be under constant review to make sure it’s at the right level to prevent her seizures ongoing, but Roald Dahl nurses will be there to support us all along this journey.
You can find out more about the charity here: https://www.roalddahlcharity.org/
You can donate to David’s fundraising here: Harriet’s Story