Paediatric onsetMultiple Sclerosis

Nadia ConwayRoald Dahl Neurology Nurse Specialist

Great North Children's HospitalNewcastle upon Tyne

Disclosures

• I have received educational and travel grants from the following:

Merck Serono

Biogen-Idec

Outline of talk

The service provided in Newcastle

Roles and Responsibilities

Case studies

Team

Consultant Paediatric Neurologists

Consultant Neurologist, Paediatric Lead

Paediatric Neurology Nurse Specialist

Adult MS Nurse, Paediatric Lead

Neuropsychologist

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)

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

Review and monitor all patients on

treatment

Make referrals to Psychology, Social

worker, OT/ Physio

Attend Team around the Family (TAF)

meetings

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

Things to consider

• Consent

• The family

• Education

• Access to social activities

• Safeguarding

• Support group

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

27/11/2009 07/04/2016

• 3rd episode - 4 years 2 months, encephalopathy and horizontal gaze palsy. IV steroids

Case study 1

• 4th episode - 5 years tremulous L hand and stammering speech

• Treatment - 5 years 3 months rebif started

7 years 6 months Tysabri

• Family history

• Neuropsychology

• Psychology input

• Educational support

Impact on the family

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

• Dysphagia - weight loss, diarrhoea, vomiting, PEG, PEJ, C-diff –pseudomembranous colitis, anal abscess, pain

Concerns

13/06/201605/06/2014

• Family support

• Consent to treatment

• Safeguarding concerns

• Psychology input

• Education provision

• Transition to adult services

Impact on the family and considerations

Questions?

Thank you