Hello everyone, I’m Stacy I am aged 32 and married with three children. I have a rare complex epilepsy called autosomal dominant nocturnal frontal lobe epilepsy (ADNFLE). Medication doesn't fully control my seizures and they never have.
When I was at school, my teachers said I was very disruptive, naughty and that I never listened to them. I would often end up in isolation and on a report card. It was so frustrating as sometimes I couldn’t help it. I had no statement, no extra support. I left school to study hairdressing and then later went onto dog grooming.
With my epilepsy, I have lots of focal seizures every time I sleep, so I am tired everyday. I take four, sometimes five, different medicines, twice a day. I have tried all of them, and with different combinations. I think it’s important to talk to trusted adults like your parents, teachers, GPs and neurologists so they can help you manage the side effects. I know that going to school is hard and maybe some people don’t understand you, that’s okay. Just show them how brave you are! I have had injuries from seizures, broken bones, burns, and so on. If someone ever laughs at you for struggling, that shows they need to learn more about epilepsy!
Every year I have video telemetry and a hospital admission – and every time I get annoyed by the aftereffects of the glue in my hair. Not only that, but I miss my family when I’m away, but they understand how important it is that my seizures are controlled as best as possible. Each seizure effects my memory, verbal reasoning and concentration. I go to a lovely hospital in Chalfont St Peter called the Epilepsy Society and my neurologist, Professor Sisodiya, is so knowledgeable and kind.
My seizures can be as simple as a blink or twitch to the face; sometimes they are very obvious, other times not at all, but they are happening and they are present. Sometimes they cluster. It is very tiring and not nice when I am coming out of them. I have been assessed for surgery but the only surgical option for me is VNS therapy. I take part in research studies if and when I can.
One of the biggest challenges I’ve faced is being a parent of two children with epilepsy. It’s hard to watch your child having endless seizures. We are in a hospital roughly every two weeks at the moment – whether that be for myself or my children.
My son had his first seizure when he was two weeks old. Because of how they were first presented, we didn’t know what was causing it. He confused all medical professionals. We also didn’t know it was genetic at this point. He then went onto having long, dangerous seizures at two years old. He was given lots of medication to stop his seizures through his hand. Our local paediatric neurologist who treated him that day was amazing and we are forever grateful to him as our boy was really unwell.
Once other doctors saw these seizures, my son was referred to GOSH onto a lovely neurologist who did all the tests, including the MRI under a general anaesthetic and video telemetry. She was very knowledgeable and tried everything she could to help him. After a while we realised medicines didn’t control his seizures either. His behaviour was challenging but we got through it. During this time my neurologist was testing me for a gene that causes epilepsy. After some time my results were back and it was positive of a drug resistant gene that can cause epilepsy. We then had my two children tested. My daughters didn’t have the gene so we were thankful of that. We had my son tested, and diagnosed, with autism. He is such a pure, gentle soul! He teaches me, and anyone else he meets, everything they need to know about life. After a few years of trying everything, in June 2018, he had a VNS Implanted at Great Ormond Street. He was extremely brave! He now goes to a special needs school almost everyday unless he is in hospital.
My daughter’s epilepsy first started with odd sensations in her sleep. Fast forward a few months she was in hospital due to a prolonged generalised seizure. This happened three times and then she was put onto medication after her EEG came back with continuous spikes in her sleep and MRI with arachnoid cyst (which isn’t the cause of her epilepsy). She was in year five by then.
Her school was extremely supportive. She was included in everything, given the same opportunities as any other child. She doesn’t have a statement with her seizures fairly controlled on one medication but she does suffer with migraines at the moment. We believe that her epilepsy is quite responsive to medications which is fabulous but we also need to be on standby at all times. A very kind group of people raised money to buy her a bed alarm which alerts us if she is having a generalised seizure in her sleep.
To any parent reading this, stay strong. I know it’s hard and painful. Unless people have been through it, they cannot comprehend it but you must be on top form for your child. They need you more than anything. Ask for support in your child nurseries, schools or colleges. Ask your child’s neurologist to write a clinic letter, confirming all the support needed for your child. Remind schools/ colleges that some of behavioural issues can be due to medication – it may make them deal with your child in a more appropriate way.
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