When a child is referred to the Evelina London complex motor disorders services, there are three treatment stages.
One: diagnosis and assessment
All patients referred to us will be assessed to determine their suitability for neurosurgery and to establish which neurosurgical procedure would be most suitable.
Children are reviewed to establish their level of motor impairment, disability, quality of life and independence skills. Further diagnostic tests are offered on an individual basis.
The team will consider whether there are less invasive interventions that could be offered, for example a different medication.
Investigations may include:
- an up-to-date MRI brain scan to assess the suitability for DBS targets
- an FDG-PET-CT brain scan to look at the metabolic viability of potential DBS targets
neurophysiological testing to look at motor and sensory pathways in the brain
Further diagnostic testing may be considered to better understand the cause of a child’s dystonia.
All referrals will have detailed assessments of:
- gross motor skills
- fine motor skills
- speech, language, communication and feeding
- neuropsychological functioning and emotional state
- participation
- quality of life.
The process of goal-setting is an essential component of the decision to go forward with a deep brain stimulator (DBS) or intrathecal baclofen pump (ITB) implant.
Goals of ITB and DBS will be established with the child and carers from the outset.
Having established which neurosurgical procedure would be most suitable, the child and family have an opportunity to discuss the implications of surgery with a team member.
A meeting is arranged with the neurosurgical team to discuss the risks and benefits of neurosurgical implantation of either deep brain stimulation electrodes or an intrathecal baclofen pump system. Goals are reviewed in detail and any other practical or technical issues are discussed.
Two: neurosurgery and immediate postoperative care
Neurosurgery is undertaken at Evelina London Children’s Hospital (DBS) or at King's College Hospital (ITB).
The patient is admitted the day before surgery.
Following ITB surgery the child is transferred back to Evelina London. Following both procedures children will remain in hospital for 5-7 days and will receive a 5 day course of intravenous antibiotics.
Three: post surgical follow-up
DBS
In the first year following surgery children will have at least 5-6 follow up appointments. During these reviews progress against goals before surgery will be reviewed and setting changes will be made. These reviews will either be with members of the medical team alone, or more multi-disciplinary reviews.
From the second year onwards children are typically reviewed on a 6 monthly basis (or as needed).
ITB
In the first year following surgery children will have at least 6-8 reviews (with more reviews required than for DBS to allow safe dose adjustment). As for DBS, reviews will either be with members of the medical team alone, or more multidisciplinary reviews.
From the second year onwards the number of reviews required is dependent upon how often ITB pump refills are required (which can vary anywhere from every 6 weeks to every 6 months).
Close liaison with local services and therapists will continue thoughout a child’s follow up with our service.
Planning for transition services will begin from 16 years of age, with an aim to have completed transition when children turn 18 years old.