Encephalitis: Amelia and Kelly
Amelia was eight years old when she was diagnosed with ADEM, a rare type of autoimmune encephalitis. Mum Kelly shares their experience of brain injury.
Published: November 2020. Date of brain injury: 2018 (aged 5)
In November 2018, five-year-old Amelia’s seizures became more frequent. She had previously experienced absent seizures, but these were rare, with months in between each one.
“Amelia’s seizures continued to get progressively worse,” explains mum Sophie. “By June last year they were happening every day, often more than once. It was then that we took Amelia to our local hospital and spent the next month going back and forth to appointments to try and understand what was wrong and what we could do to help.”
On the 8th July 2019, Amelia was transferred to St George’s Hospital, where she stayed for 10 weeks. She was diagnosed with autoimmune encephalitis, a rare neurological condition causing inflammation of the brain and was put on a course of antibiotics. However, these did not ease any of Amelia’s symptoms so in August she was moved to steroids.
“Amelia was very frightened and confused when she left hospital,” said Sophie. “It was an incredibly hard time for her and she became very angry. We heard about The Children’s Trust’s Brain Injury Community Service (BICS) through our neurological team at St George’s, and after a phone call with Brain Injury Specialist Nicola, she visited us at home to help support Amelia’s ongoing recovery.”
The Brain Injury Community Service (BICS) supports children across the UK. Therapists see children and young people in their home environment, at school and virtually. BICS offers clinical screening, advice and onward referral, as well as community-based multidisciplinary neurorehabilitation.
“Nicola from BICS has helped me and Amelia in so many ways. She helped us with understanding Amelia’s medication, her change of behaviour and she answered any questions that we had after not fully understanding what her consultants had said. She was able to advise us on how to get through the day with Amelia, by helping get her back into a routine at home and school. Nicola also attended a meeting at Amelia’s school to discuss how they too can support her which has proven to be very beneficial.”
Amelia returned to school in October 2019 and is really enjoying it. She originally started by doing 30 minutes a day, and although Amelia’s timetable is still very much focused on how she is feeling, she has now started staying for up to three hours at a time.
“She’s now a completely different child,” explains Sophie. “She’s very calm and completely understands what has happened to her after a story that relates to encephalitis called Gilley the giraffe who changed. Amelia still suffers with sleeping and behaviour changes but we take each days as it comes. We are currently talking about what treatment, if any, Amelia should have next and we will know more after her next MRI scan.”
Amelia is now on The Children’s Trust BICS Long-Term Register, which means that Nicola and the team will continue to check in with the family at key educational transitions to see how they are getting on and if any further support is required.
“Without the help and support from The Children’s Trust, my family wouldn’t have been able to get through Amelia’s recovery and transition back into our normality so smoothly,” said Sophie.
“It’s so reassuring to know that I can contact Nicola at any point and she is more than happy to answer any questions that I have. We will always be so grateful and would like to say a big thank you to The Children’s Trust team for helping us.”
Amelia and mum Sophie featured on BBC One’s Lifeline appeal on 22nd November 2020, hosted by Martin Kemp. You can watch the 10-minute film featuring Amelia and family here.
