When Harriet had her first epileptic seizure when she was 2.5 years old.  She was already under the care of the Roald Dahl nurses at QA Hospital due to her genetic disorder.

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.

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 days activities.

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.

This affects Lizzie (my wife) and I, as once the adrenaline wears off we are very tired due to having to stay alert in hospital during the night, waiting for updates.

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.

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.

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.

Why Roald Dahl Epilepsy Specialist Nurses (roalddahlcharity.org)