I had never heard of this disease before and it has been a scary year, constantly worrying of a relapse and having little information about this disease.
Encephalitis International’s website has helped so much. Being able to read other people’s stories and their roads to recovery has given us hope.
A couple of weeks before my daughter Cerys was admitted to hospital, she seemed to be struggling at school: a little distant and forgetful, but nothing that was cause for concern. I just presumed she was tired from too many late nights and sleepovers.
Two days before going to hospital, I took Cerys clothes shopping. She had a vacant look, taking ages to do simple tasks, but the night before she’d slept at a friend’s house, so was complaining she felt tired. At home she was sleeping more and more and became difficult to wake.
The following day, the beginning of half term, she seemed okay. She was holding a conversation, came food shopping with me and was playing with her younger brother. But, just a few hours later, we found her having a seizure on her bed. Her eyes were rolling, she was shaking and foaming at the mouth.
We called an ambulance and she was fully recovered by the time they arrived with no recollection of what had happened. She was taken to A&E where a CAT scan and observations all came back clear. They even considered sending her home because she was alert and well. She was only kept in because I mentioned the changes in her over the past week or so.
She was moved onto the children’s ward where she had another four seizures in close succession, leaving her confused. She was then moved to an ICT unit.
The following morning the seizures started again and didn’t settle until she was given intravenous epilepsy medication and antibiotics. She had ECC which showed unusual brain activity. Her MRI came back clear.
The doctors were now treating her for suspected meningitis and epilepsy. Results from her lumbar puncture showed a virus which we were told could be meningitis or encephalitis, but it would take longer for more results to come back.
Cerys stayed in hospital for six days and had no more seizures.
Bringing her home was so scary. Leaving the security of nurses and doctors, the constant worry of another seizure. My biggest worry was if she had one in her sleep and we didn’t hear her. I had watched Cerys stop breathing from the more aggressive seizures, so trying to go back to some sort of normality seemed impossible.
The Cerys we brought home from hospital was different. My bright, bubbly daughter had gone. She was vacant, slurred speech, forgetful, distant.
The hospital, six weeks later, informed us it was encephalitis & she was referred to John Radcliffe Hospital in Oxford.
She had an ultrasound on her ovaries to rule out a tumor which came back negative. She also had a memory test which showed a decline in her thought processing and she was given a course of steroids.
We are now 13 months in and I have my daughter back.
She’s doing well at school, her vacant expression has gone and she can follow a list of tasks instead of having to break everything down for her. She’s finished her course of steroids, but still takes epilepsy tablets.
Doctors are unsure if encephalitis has left her with epilepsy, only time will tell. The illness has left her with anxiety which we are trying to manage on a day-to-day basis.
It’s hard to stop trying to smother her, give her some independence back but we’re getting there. There’s still never a night I don’t lie in bed listening for the faintest of noises and constantly checking on her whilst she sleeps, but I’m hoping once we get past these next 12 months things will start to get easier.
Cerys has started back at football and doing well. Its a long road to recovery but its starting to look like a positive one and hopefully more people can share their success stories.
Thank you for letting us share our story.
Kerry (Cerys’ mum)
