Sonia and Max

Max is 12 and was first diagnosed with epilepsy when he was 7. It took a long time to get a diagnosis, as his doctor first thought he had a sleep disorder. He kept on asking for seizure videos, but it’s difficult to film seizures when you are trying to keep your child safe! The initial advice and information we got was just a few leaflets from the hospital. Max had many EEGs and MRIs, but it was only because I kept on pushing for more treatment that we got an appointment at Great Ormond Street Hospital. Last year they diagnosed him with Lennox Gastaut syndrome.

Max’s first diagnosis had a big impact on me. I had never seen anyone have a seizure before, let alone my son. I was constantly worrying, trying to understand everything. Chasing hospitals to get referred, to get answers, was exhausting. We just wanted to help him and get the right medication. His seizures got worse, coupled with side effects such as behavioural changes and weight gain. He started having drop seizures, so I was always on edge and worrying he would fall down the stairs. They upset him too.

Max is also autistic and has learning disabilities. He finds it hard to empathise and speak to other people about themselves. He loves to tell them about his interests, especially planes and trains. His previous mainstream school found it difficult to help him and include him in activities. It felt like an inconvenience, as they wanted me to pick him up every time he had a seizure, even a small one. But the team at his special school have been much better and Max has been a lot happier and calmer over the last two years.

Sonia and Max
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