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Ruby’ Story – Acute Disseminated Encephalomyelitis (ADEM)

 

6 year old Ruby was admitted to the Oxford Children’s Hospital (CHOX) in June 2016 following rapid onset paraplegia and acute urinary retention. She was diagnosed with Acute Disseminated Encephalomyelitis (ADEM).

She was initially seen by the acute multi-disciplinary team (MDT) which included Physiotherapy, Occupational Therapy, Neurology and Speech and Language Therapy. After 1 week’s admission she was medically stable and ready to receive intensive rehabilitation from the Paediatric Neuro-Rehabilitation Team, based cross site at CHOX and Nuffield Orthopaedic Centre (NOC).

Whilst on the ward she received daily treatment from the neuro-rehabilitation Occupational Therapist (OT) and Physiotherapist for 2 weeks. Ruby also had a joint Physio/Orthotics assessment and then provision of a splint to improve her walking pattern and stability. Once safe to return home she was discharged with the plan of attending the NOC for a transitional period of 1 week for intensive therapy under the early-discharge model.

During this transitional period Ruby was seen daily (Monday-Friday) and the team regularly reviewed and discussed her progress during the week. It was felt further input was required in order to maximise outcomes and support her transition back in to the community. With this in mind she attended the hospital school and the OT provided additional support with equipment and advice to support in the classroom. There was the opportunity for Ruby to attend 2 aquatherapy sessions for the Physiotherapist to model appropriate water based activities that her family could then continue in the hotel and local pools. Both Ruby and her mum were seen for regular sessions with the clinical psychologist.

Following early referrals to the community services there was a transfer of care after her transitional week, however Ruby continued to attend weekly MDT appointments at the NOC for a further 6 weeks to support this successful transition. This was finalised with a MDT meeting, held at her school, with the family and school staff to ensure that all aspects of her care had been addressed and appropriate advice and strategies were provided to help her optimise performance in tasks and activities within the school environment. Ruby also underwent a neuro psychology assessment in September 2016.

Ruby was successfully discharged from the service following the MDT meeting at the end of September and the community services are meeting her ongoing therapy needs in the educational and home setting. She returned to Year 2 at school and her learning support assistant (LSA) has now been trained to help with her catheter which has meant that Mum no longer go into school every day.

When Ruby first met the neuro rehabilitation Physio and OT in June her Mum clearly said that their family aim was for Ruby to walk down the aisle at her Mum’s wedding in October 2016. This was quite a big goal as at the time Ruby had no head or trunk control and was unable to move her legs. With a strong working relationship between the neuro rehabilitation therapists and the family this goal was achieved and Ruby did indeed independently walk (run!) down the aisle at her Mum’s wedding much to the delight of the whole family.

“I thought that the service was fantastic and we thought it was down to the care that she had that she made such a quick and successful recovery,” said Mum when asked about the whole period. “They weren’t just caring towards Ruby, they were caring towards all of us as a family and that made a big difference”.

 

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