paediatric onset multiple sclerosis - nadia conway
TRANSCRIPT
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Paediatric onsetMultiple Sclerosis
Nadia ConwayRoald Dahl Neurology Nurse Specialist
Great North Children's HospitalNewcastle upon Tyne
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Disclosures
• I have received educational and travel grants from the following:
Merck Serono
Biogen-Idec
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Outline of talk
The service provided in Newcastle
Roles and Responsibilities
Case studies
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Team
Consultant Paediatric Neurologists
Consultant Neurologist, Paediatric Lead
Paediatric Neurology Nurse Specialist
Adult MS Nurse, Paediatric Lead
Neuropsychologist
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Service in Newcastle
• Joint clinic appointment in COPD (6 monthly) from diagnosis
• Adult MS Nurses regularly review with Paediatric Neurology Nurses
• All patients are referred to Psychology
• Admitted to paediatric wards until they are transitioned (up to 18 years)
• Young person’s clinic in adult OP (16-22 year olds)
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Roles and responsibilities: Paediatric Neurology Nurses
Support the education of parents and children with a new diagnosis
Attend joint adult / clinic appointments and paediatric only appointments
Provide support and advice to parents, schools and other Healthcare Professionals
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Review and monitor all patients on
treatment
Make referrals to Psychology, Social
worker, OT/ Physio
Attend Team around the Family (TAF)
meetings
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Roles and responsibilities: MS Nurses
Education regarding diagnosis & treatment
Prescription ordering
Provide support and advice to PaediatricTeam
Attend clinic appointments
Liaison between the 2 teams
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Things to consider
• Consent
• The family
• Education
• Access to social activities
• Safeguarding
• Support group
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Case Study 1
• 1st episode - 3 years 9 months, loss of vision L eye. CIS, IV
steroids
• 2nd episode -3 years 11 months, loss of vision R eye. IV steroids
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27/11/2009 07/04/2016
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• 3rd episode - 4 years 2 months, encephalopathy and horizontal gaze palsy. IV steroids
Case study 1
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• 4th episode - 5 years tremulous L hand and stammering speech
• Treatment - 5 years 3 months rebif started
7 years 6 months Tysabri
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• Family history
• Neuropsychology
• Psychology input
• Educational support
Impact on the family
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Case study 2
2 year history of chronic fatigue following glandular fever, vomiting & abdo pains.
• 1st episode - 15 years 6 months, Dysphagia & cycles of ‘gastric vomiting’, increasing headache. LP WCC in CSF
• 2nd episode - Paraesthesia both hands, heat intolerance, numbness R side face, pain in R forehead. WCC
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• Dysphagia - weight loss, diarrhoea, vomiting, PEG, PEJ, C-diff –pseudomembranous colitis, anal abscess, pain
Concerns
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13/06/201605/06/2014
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• Family support
• Consent to treatment
• Safeguarding concerns
• Psychology input
• Education provision
• Transition to adult services
Impact on the family and considerations
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Questions?
Thank you