‘We watched her deteriorate every day. It was torture.’

Louise Fein on parenting a child with a rare form of epilepsy

Mother carrying girl

by Louise Fein |
Updated on

For more parenting stories and advice, check out Grazia's parenting community on Instagram @TheJuggleUK

When my third daughter came along, my older children were seven and four respectively. Motherhood by now should have been a breeze – the older ones were at school, and I knew what I was doing with a baby. This one was my last, and I had the time and space to enjoy her before I went back to work. The first two years were, indeed, blissful. Our daughter, Lola, was doted on by her older siblings and, of course, her parents and the wider family. She was a joy – bright, full of cheeky character. I had by then set up my own finance consultancy business so that I could work flexibly around the children and that was going well.

But then our world fractured when, out of the blue, at the age of just two, Lola developed a rare and severe seizure disorder, the cause of which was never found. I knew very little about epilepsy until Lola began to suffer from it, nor did any of my friends or family – certainly nobody had seen anything like Lola. She was suffering from, on average, seventy seizures per day. She became extremely hyperactive while, at the same time, she began to lose all her skills – her speech, play ability, toilet training, everything. She was a danger to herself, not only because she lacked any understanding of dangerous situations, but also she was physically strong and active – a very difficult combination. For example, she would try to climb out of the window onto the roof. Not only that, but she had so many seizures, she could crash her head into the walls, floor or furniture at any given moment.

Lola also didn’t sleep well. She would be awake and hyperactive for hours every night. My husband and I took turns to be on night duty, but we were on our knees, trying to juggle jobs, our other children and holding ourselves together. It put our relationship under severe strain. And it was incredibly lonely because nobody, neither health professionals nor friends, however kindly and well-meaning, had any idea of what we were going through. The worst of it was not being able to see an end to the situation, or a way that it could get better. We watched her deteriorate little by little every day, and there was nothing we could do to stop it. It was torture.

It was only when I reached out, and let others help, that things began to improve.

Eventually though, when at rock bottom, I finally reached out to close friends and family for help and a sympathetic ear, this helped enormously. Allowing others to take some of the strain really did save me.

When Lola was three and a half, doctors tried a new medicine called Levetiracetam and - miraculously - it finally worked. Lola had had her last seizure but, by then, her mental age was just ten months old. We managed to get through those difficult years with support from a children’s hospice where she went one night a week so we could sleep. We also had a wonderful and kind neighbour who looked after Lola a few times a week, which enabled me to have some precious hours to devote to my other children and myself. And I’ll always be grateful to family and friends who were there for us all the way through.

Lola is now a teenager, who has far exceeded all expectations given to us by the doctors. She struggles academically, but she is very sporty, bright and funny. She has lots of friends and, with support, attends a mainstream school.

When I was in the thick of that nightmare, I did what I could to survive each day, trying to manage on my own. But I wasn’t managing. It was only when I reached out and let others help, that things began to improve. Those years were so hard, but they were made bearable by the kindness of others, and that is something I shall never forget.

The Hidden Child by Louise Fein, published by Head of Zeus, out now in hardback

Just so you know, whilst we may receive a commission or other compensation from the links on this website, we never allow this to influence product selections - read why you should trust us