Charlie (12) went from being a happy, outdoor loving child and “a mini Bear Grylls” to one that was terrified to be on his own as he was having 15-16 full Tonic-clonic seizures a day. His mum, Kath talks to us about how Roald Dahl Specialist Epilepsy Nurse, Kirsten Johnson has helped the whole family by being there for them every step of the way.
Tell us about Charlie’s condition and the circumstances of his diagnosis? Charlie suddenly started coming home from school and saying he was having panic attacks.The school that he was at then was not being very supportive, so we put the panic attacks down to that. Then he started having them at night and it was our natural conclusion that they were night terrors as he was terrified. However, he went from having just a couple of these episodes to 15-16 a day by the time he was admitted to hospital in March 2020. When it was explained to us what a seizure is, it was clear that’s what was happening to Charlie. His seizures had escalated to full Tonic-clonic seizures lasting one and a half minutes at night. (A Tonic-clonic seizure has two stages. In the tonic stage, you lose consciousness, the body goes still and you may fall to the floor and in the clonic stage, your limbs jerk about, you may lose control and have difficulty breathing.) It all escalated so quickly and the whole thing was really scary. It was terrifying for us and him. He was in physical pain with it; it was just awful. Really tough and exhausting. We got an appointment to see the specialist, Doctor Dunkley and our Roald Dahl Specialist Epilepsy Nurse, Kirsten and that’s when things changed for the better.
What impact has having a child with a long-term health condition had on you and your family? It makes you aware of things that you had previously taken for granted. We have to make sure someone is with him all the time. I’m a bit more relaxed about it now but we have to be mindful of it as it won’t go away. When I’m with my husband, if we see Charlie flinch on the sofa, we wonder, “is this it? Is this the day his seizures will come back?” Practical things like school become a part of your daily dialogue. We want Charlie to have independence, but we have to constantly consider if his Epilepsy is going to put him at risk. It’s a filter over everything we do. It’s there all the time.
How has your Roald Dahl Nurse helped you cope with these challenges? When we met our Roald Dahl Nurse, Kirsten, she said, “here’s my card with my contact details. If you need anything or have any questions about Charlie’s diagnosis, you can ring me, text me, email me – whatever works for you. I am here for you.” My husband and I came out and said, “Wow, that’s incredible support to have, for someone to say, I am here.” Doctor Dunkley is brilliant, and he went through all the technical things. Kirsten then reassured us. She was very pragmatic and soothing, saying, “don’t worry if this medication doesn’t work, there are more. This is all going to be fine.” You feel isolated as a parent when you have a sick child. People don’t know how hard it is to be up all night. The nurses you see generally are lovely, but they only see your situation in fragments. Kirsten just got it straight away and we didn’t have to overly explain it or justify our worry. The next day after our appointment with Doctor Dunkley, the first message we got was from Kirsten asking, “is everything ok, is there anything I can help you with?” When Charlie was worried about his diagnosis, we could pass on the confidence and reassurance that Kirsten had given us. It was easier to answer Charlie’s questions as we knew we could ask Kirsten.
Around two weeks later, lockdown had kicked in and we knew Charlie was due to see Doctor Dunkley again. Kirsten contacted us and sorted everything out from letters to our GP to prescriptions. We didn’t have to go through the hospital switchboard as she just sorted it out for us. She is a lifeline. She took all the worry away about whether our questions were important or valid and also the challenge of trying to get hold of the right person through a switchboard. That worry went away thanks to Kirsten. And it was lovely to tell her that Charlie has improved and has been seizure free for a month now. It feels great to have that constant dialogue. Charlie is doing so well on his medication that we don’t have to go back to clinic for six months and I feel confident about that as I know Kirsten is still there for us. It only takes a Whatsapp message and we can get the help we need if his medicine stops working or he gets a rash. It’s an absolute load off. I know she will support us with Charlie’s new school too and I know if we go on holiday that wherever we are I can text her. It’s amazing to have somebody to talk to that we know, someone that feels more like a friend.
How would you feel if you didn’t have your Roald Dahl Nurse? It makes me want to cry thinking about it. It’s been such a big change to our lives and to think we would be back doing that on our own makes me feel really emotional. In a space of a month, we went from having a happy child to one that was terrified to sleep or to be on his own and it’s really hard to navigate that as parents. The reason why Charlie is so confident now is because we are confident that we have someone who understands and who is there for us. Epilepsy is a very complex condition and I don’t think we could do it on our own. I can’t imagine not having her there. She will always be part of such an important phase of our life.
What would you say to the people who have donated to Roald Dahl’s Marvellous Children’s Charity and helped fund your Roald Dahl Nurse? Oh my god, it’s lifechanging stuff. The reassurance she gives is invaluable and I will pay that back in spades. To know that there are families out there who don’t have a Roald Dahl Specialist Nurse is awful. Any donation of any size is a virtual hug from someone supporting you and that is amazing. We are all worried about having someone who is sick in our family and you can’t put a price on having someone to hold your hand through it. It’s such a joy to have our Roald Dahl Nurse, Kirsten. I know she will be there if we need her and that’s massive.
Every seriously ill child deserves a Roald Dahl Nurse. Please make it happen. Donate today: www.roalddahl.com/donate