Finding out your child has complex epilepsy is both a shock and a huge change for the whole family. We caught up with Angus’ mum, Nicola to find out how their Roald Dahl Specialist Nurse, Pauline has supported the whole family.
Tell us about Angus’ condition and the circumstances of his diagnosis: Angus’ epilepsy came out of the blue nearly ten years ago. We were driving up the motorway to visit my husband’s parents for lunch. My younger son started shouting that something was wrong with Angus and when we turned round Angus was convulsing, he had gone blue and slavering at the mouth. It was terrifying and we didn’t know what was going on. We pulled onto the hard shoulder and called an ambulance. We thought he was choking. The paramedics took us to Ninewells hospital in Dundee where they told us that he had had a febrile convulsion (a seizure that can happen when a young child has a fever). He didn’t have any more seizures for three days and then had one in the kitchen. We phoned an ambulance and were whisked to the Victoria hospital in Kirkaldy. After lots of tests and no diagnoses, we were about to be discharged, when he had another seizure in front of the consultant. He was immediately diagnosed with epilepsy and at that point, our lives totally changed.
Angus is now 14 and he has a serious form of epilepsy, which is not controlled. After lots of tests he was diagnosed with possible Autoimmune Epilepsy in early 2019.
Over the years, Angus’ epilepsy has changed. He has generalised or tonic clonic seizures and focal seizures. He had two years of no seizures about six years ago and was weaned him off his medication but a month later, his seizures started again, and he hasn’t been seizure free since. He can have a month without one and then suddenly, he can have three in a row. It’s very unpredictable. At the moment he is having them every seven days. He could have an isolated seizure, or he could have three in a row. He hates his epilepsy. He worries about what people think, and knows it affects him on a daily basis. It’s a rollercoaster, however we try to give him as much of a normal life as possible.
Tell us about Angus? Angus is a typical 14-year-old boy! He loves rugby, both watching and playing it. That’s his main passion. He plays the Violin and loves singing, listening to music and watching films. He also enjoys playing on the Xbox with his younger brother Fergus who is 12. We also do a lot of walking as a family with our dog and have managed a Munro or two! All Fergus knows is Angus with epilepsy. He is great at working out when Angus is about to have a seizure and will come and tell us. He is very good at looking after Angus and keeping an eye on him.
What impact has having a child with a long-term health condition had on you and your family? Looking back when Angus was younger life was a lot easier. When he was diagnosed just before he turned four, his seizures were mostly at night and he recovered quickly. He was more portable, and I could pick him up but now he’s far too heavy to move. If he has a seizure on a walk or falls out of bed, it is very hard to move him. We can’t leave Angus alone and he is never by himself for long. We worry about the impact his epilepsy has on him now and what impact it will have on him in the future. We had this great idea we could take Angus skiing abroad, however quickly realised that finding a ski school who would be happy to teach him was almost impossible and there is no way he could go on a chair lift. He is not allowed near water by himself just in case he has a seizure. We don’t even know if Angus will be able to leave home. I watch my friends’ children become more independent as they get older. They can be left home alone, can go to the shops together or on a train, or just hang out. His epilepsy I believe has affected him socially and is also has a huge impact on his learning. We live in the countryside, so he doesn’t feel it as much.
Angus had to shield during lockdown because of the steroids he is currently taking. We had a call from Pauline on the Sunday night, a week before lockdown and she said, “Angus can’t go to school tomorrow. Because he’s on steroids, he is high risk.” It was really hard for him. He missed a lot of school including the last week of his old school. He’s back at his new school now as they have lowered the dose of steroids that he is on. He’s a pretty tough little boy though; he doesn’t complain despite all the treatments he’s had to go through.
How has your Roald Dahl Specialist Nurse helped you cope with these challenges? We’ve known our Roald Dahl Specialist Nurse, Pauline for around five years, we met her when we decided to move to another consultant. Pauline is incredibly supportive and proactive in trying to help Angus. He has had endless tests over the last few years to help try and get to the bottom of what is the cause of his epilepsy. Pauline is always at the end of the phone when I need her to discuss anything. There have been episodes where Angus has a few seizures in a row, and I will text Pauline to ask if we should give him his emergency med to stop the cluster. I’ll text her to ask if we should administer it now or hold off and give it after the next seizure. It’s so reassuring to know that she is there for us and that she always responds, even when she is kayaking on a remote Scottish loch or climbing a mountain. It gives me confidence to know that there is someone who is listening and taking it on board. It’s nice to know I can let Pauline know and she will tell Angus’ consultant, so they know the frequency of his seizures. We also have a great friendship and do like a giggle.
How would you feel if you didn’t have your Roald Dahl Specialist Nurse? I would really miss Pauline if we didn’t have her and I have no doubt we would stay in touch if she ever leaves or retires. She is the nicest person, has a heart of gold and is so supportive of us as a family. It’s so important for any family with a child with a serious condition – you need support and reassurance to help you cope. As a family we have gone through a lot with Angus. He’s had MRI scans, a PET scan, six months of Immunoglobulin therapy, five days of video telemetry and has been on the ketogenic diet for six months and is currently on Steroids. Pauline has been there with us through all of it. When we have had to stay overnight in the hospital, she makes an effort to come and see us. She brings treats and cheers us up. It’s so important, especially for Angus that he knows she is there. We have mutual respect for each other. She is so unassuming, and really, really, wonderful.
What would you say to the people who have donated to Roald Dahl’s Marvellous Children’s Charity and helped fund your Roald Dahl Specialist Nurse? I would say thank you from the bottom of our hearts; I don’t know what we would do without our Roald Dahl Specialist Nurse! She is just the loveliest person. She is very close to her family, so she understands. She is very active and climbs up mountains and cycles hundreds of miles! I just think she’s incredible and inspiring. She sends me photos when she’s up a mountain and then when she’s back, she’s immediately in nurse mode. She’s got such a heart of gold. I honestly don’t know what we would do without her. We are fond of her as a family and I think she is fond of us too. She has become a friend in many ways. I think you need that someone who you can have a cry to when you’re in a situation like ours and I think she sees how hard it is for us. Because Angus’ epilepsy is complicated and not controlled, I’m in touch with Pauline at least once or twice a week and because of that, we’ve got to know her more. Before we had Pauline’s support, it was a disaster. Pauline is an amazing person. It’s so important to us as a family to have that support so you don’t feel like you’re left high and dry.
To make a donation and help the charity support more children like Angus, please visit www.roalddahl.com/donate