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Paediatric MS

Paediatric MS. MS in young people-what do we know about their diagnosis?. 2.7-10.5% of patients with MS are diagnosed before 18 years of age (Duquette et al 1987, Ghezzi et al 1997, Boiko et al 2002 McDonald and Compston 2006) Onset as young as 10 months reported (Shaw & Alford 1987)

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Paediatric MS

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  1. Paediatric MS

  2. MS in young people-what do we know about their diagnosis? 2.7-10.5% of patients with MS are diagnosed before 18 years of age (Duquette et al 1987, Ghezzi et al 1997, Boiko et al 2002 McDonald and Compston 2006) Onset as young as 10 months reported (Shaw & Alford 1987) But only approx 0.4% diagnosed before the age of 10 (McDonald and Compston 2006) Many adults diagnosed with MS report experiencing MS symptoms in childhood (Boyd and Macmillan 2005, Chitnis et al 2009) Diagnosis is based on same classification as adults, but reliance on paraclinical tests

  3. Clinical presentation Generally it is similar to adults but children more likely to: be systemically unwell at onset of disease (headache, nausea, vomiting, lethargy) exhibit symptoms of encephalopathy malaise, irritability, low-grade fever, coma diagnosis of encephalitis often queried Monosymtomatic MS is less common in childhood Optic Neuritis is a common presenting feature Have to distinguish from ADEM and other conditions

  4. Children v Adult MS Children are more likely to have: Systemic manifestation Relapsing remitting pattern High rate of recovery from initial relapse and a slow progression (Cole and Stuart 1995) Female preponderance over 12 Polysymtomatic Abnormal VEPs Seizures Bilateral ON (Morales et al 2000) Children are less likely to have: Oligoclonal banding in CSF (Hauser et al 1982, Bye et al 1985) Prognostic indicators (Pinhas-Hamiel et al 2003) Aggressive disease (Pinhas-Hamiel et al 2003)

  5. Prognosis Studies prove that children have a good outcome, if diagnosed over 2 years of age 40-60% of children will relapse in first year following diagnosis Frequent relapses (Ruggeri et al 1999) Recent study says 50% of children will be SPMS at 30 years of age (Banwell et al 2007) DMTs can improve long term prognosis (Banwell et al 2007) PP=5-22% (Duquette et al 1987, Cole and Stuart 1995) Seizures may indicate a more aggressive clinical course (Ruggerie et al 1999)

  6. What is the child/young person experience at diagnosis? Didn’t know what MS was They feared dying, many were frightened especially if frightened and saw parents distress Confused Relieved Self pity - why me? Some thought it would just go away Had they caught it Sadness Boyd and Macmillan 2005

  7. How did they feel? Different Needed to be more cautious Not to take life for granted Only a few mentioned disability How did they want to learn? Read To talk to someone Internet HCPs

  8. Support for the child or young person needs to address: Family centred care Assessment of needs Assessment of coping Education and information Phoneline/Availability Listening, Emotional support Advocacy Crisis management Symptom management Schooling, education Local support group for family

  9. What can we do to support the child/young person? Reassure-not going to die Give information in simple terms Need to offer re education Respect the child's right to restrict information Acknowledge they will face some differences in life Provide guidance e.g. fatigue management, schooling issues Discuss disclosure to others

  10. How can we support the parents? Identify that the child can perceive worries, anxieties Not to overwhelm the child with information Talk about their stressors and fears Discuss schooling issues Encourage them to talk to child regarding who needs to know Also talk to teachers regarding confidential nature of their childs diagnosis Boyd and Macmillan 2005

  11. Treatment Challenges DMTs Parents often make the treatment decisions Pressure from parents to take the drug Children may not have the cognitive maturity to understand the rationale for injections and long-term benefits Side effects can be very off putting Adolescents do not always accept need for therapy-Adherence issues can be challenging Long-term steroid use causes growth retardation None of the disease modifying therapies have been systematically studied in children efficacy, dosing issues Jenny Boyd 2002

  12. Treatments Relapse management: 30mgs/kg per day for 3 days (Pinhas-Hamiel et al 2001) DMTs: start at ¼ to ½ of adult dose and gradually increase to full dose over 3-4 weeks as tolerated children under age 7 consider leaving dose at ½ adult dose and increase when they are older maximize dose while minimizing side effects Monitor liver functions and FBC closely Jenny Boyd 2002

  13. MS International Federation (www.msif.org/en) has created a database of information re: children with MS. This is primarily for research benefits. The aims are to increase knowledge and awareness regarding childhood MS. It is hoped to develop a uniform approach to diagnosing, assessing and treating childhood MS.

  14. MS Society has info for young people with MS – go to www.mssociety.org.uk and click on ‘Support and Services’ then ‘Young People’ MS Society in Canada has a booklet that can be downloaded entitled ‘Kids get MS too’ The US MS Society publishes ‘Keep S’myelin’ and @Teen InsideMS. Both are available at www.nationalmssociety.org

  15. Summary Increased awareness will increase the diagnosis of MS in children Care needs to be adapted to address developmental issues Involve the child in the plan of care Integration into school and recreational activities important Supporting parents supports the child Collaborate with paediatric specialists We still have a lot to learn about paediatric MS!

  16. References Pinhas-Hamiel O., Sarova-Pinhas, I., Achiron, A. (2001) Multiple Sclerosis in Children and Adolescence: Clinical Features and Management. Paediatric Drugs. 3. 5. 329-336 Boyd, J and Macmillan L (2005) Experiences of Children and Adolescents Living with MS. J Neuro Nurs 37. 6. 334-342

  17. References Cole, GE and Stuart, CA. (1995) A long perspective on childhood multiple sclerosis. Dev Med Child Neurol. 37. 8. 661 Duquette, P., Murray, TJ., Pleines, J et al . (1987) Multiple Sclerosis in children: clinical profile in 125 patients. Journal of Pediatrics. 3. 359-363 Ghezzi, A. Deplano, V. Faroni, J et al (1997) Multiple Sclerosis in childhood. Clinical features of 149 cases. Multiple Sclerosis. 3. 1. 43-46

  18. References Ruggierie, M., Polizzi, A., Pavone, L et al (1999) Multiple Sclerosis in children under 6 years of age. Neurology. 54. 478-484 Mikaeloff, Y., Moreau, T., Debouverie, M., Pelletier, J., Lebrun, C., Gout, O et al (2001) Interferon Beta treatment in patients with childhood onset multiple sclerosis. J. Padiatr. 139. 443-446 Tenembaum, S., Martin, S., Fejeman, N. (2001) Disease-Modifying Therapies in childhood juvenile multiple sclerosis. Multiple Sclerosis. 7. (Suppl 1) S57.

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