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Fetal Alcohol Spectrum Disorder

Presentation for the Cree Nation Kent Saylor, MD January 15, 2013. Fetal Alcohol Spectrum Disorder. Introduction. Pediatrician Mohawk Nation Montreal Children’s Hospital, Northern and Native Child Health Program Visiting the Cree communities since 2000

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Fetal Alcohol Spectrum Disorder

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  1. Presentation for the Cree Nation Kent Saylor, MD January 15, 2013 Fetal Alcohol Spectrum Disorder

  2. Introduction • Pediatrician • Mohawk Nation • Montreal Children’s Hospital, Northern and Native Child Health Program • Visiting the Cree communities since 2000 • Became interested in FASD due to large number of referrals

  3. Child #1 • 11 year old boy, grade 6 • Born prematurely • Problems in school • Poor attention span • Not learning well • Hard time making friends • Normal growth and appearance • Confirmed alcohol exposure in utero

  4. Child #2 • 11 y/o boy • Been in and out of foster care • Problems at school • Poor concentration • ? memory problems • Some social difficulties • Face – mild abnormalities • Confirmed alcohol exposure in utero

  5. Child #3 • 7 year-old boy • Hard to manage at home • Single dad, hard to set limits • Hard to manage at school • Hyperactive, can’t sit still • Not learning well • Normal growth and appearance • Confirmed alcohol exposure in utero

  6. How do you know if they have been affected by alcohol exposure in utero? • If they are diagnosed what do you do to help them? • What resources will they need?

  7. Terminolgy FASD Fetal Alcohol Syndrome (FAS) Alcohol-related Neurodevelopmental Disorder (ARND) Partial Fetal Alcohol Syndrome (pFAS)

  8. “FASD” is not a diagnosis

  9. Older terms FAE ARBD

  10. FASD • There are strict criteria for diagnosis for all 3 official diagnoses • Growth • Facial features • Brain damage* • Alcohol use during the pregnancy*

  11. FASD • All children with FAS, pFAS or ARND have: • Alcohol exposure during the pregnancy • Brain damage • This is a life-long condition!!

  12. Brain Damage ARND = pFAS = FAS http://minnesota.publicradio.org/display/web/2007/09/06/fasd6 http://www.fascme.com/c104.php

  13. Most common diagnosis The majority of children affected by alcohol exposure have ARND and look totally normal!

  14. Diagnosis of FASD • There is no blood test or x-ray to detect FASD • The diagnosis is made by the evaluation of a specialized team including the following: • Doctor • Psychologist (neuropsychologist) • Occupational Therapist • Speech and Language Pathologist

  15. Multidisciplinary Team Approach Ideally the team evaluates the child over several days, comes to a conclusion together about the diagnosis and gives the information and recommendations to the family.

  16. Diagnostic Team for FASD • Doctor • Must have knowledge about FASD • Know the criteria for FASD • Extra training for diagnosis • Be competent in making the measurements • Cannot make the diagnosis alone

  17. Diagnostic team • Psychologist • Have knowledge about FASD • Know the criteria for FASD • Extra training for diagnosis • Be able to test all brain domains for evidence of brain damage • Cannot make the diagnosis alone

  18. Occupational Therapist • Must have knowledge about FASD • Know the criteria for FASD • Extra training for diagnosis • Know which tests to use • Cannot make the diagnosis alone

  19. Speech and Language Pathologist • Must have knowledge about FASD • Know the criteria for FASD • Extra training for diagnosis • Know which tests to use • Cannot make the diagnosis alone

  20. Barriers to diagnosis There is no multidisciplinary diagnostic clinic in Quebec!

  21. Barriers to diagnosis - Quebec • Doctors and psychologists • Most are not qualified to do an evaluation • Most have not taken the extra training • Most do not know the exact criteria • Most do not know who to refer to • Some may try to make the diagnosis alone which can be dangerous

  22. Barriers to diagnosis-Quebec • Occupational Therapists and Speech and Language Pathologists • Most have not taken the extra training • Most do not know the exact criteria • Most do not know what to test for

  23. Cree Territory - Barriers • Current status • Poor documentation of alcohol use in the medical records of the birth mom • Incomplete birth records from hospital where mom’s are delivering • Many children in foster care and alcohol history is unknown. Youth protection workers finding it hard to get this info. • Denial of alcohol use

  24. Cree Territory - Barriers • Speech and Language Pathology • None in the territory for children 0-5 years • None have the expertise to evaluate children for FASD • Occupational Therapy & Psychology • Limited resources in the territory • None have the expertise to evaluate children for FASD

  25. Cree Territory - Barriers • Doctors • Most do not know about FASD • Most do not know who to refer to • Some are not making the referrals because they do not feel there are adequate resources to help a child with FASD!

  26. Resources needed!

  27. Diagnostic Team • A diagnostic team is needed • We are currently evaluating the children by individual assessments and not using a team approach • We are working with the Cree Nation to find a solution

  28. Resources in the communities • There are many entities who must be involved in raising children with FASD • Parents • Schools • Health care • Daycare • Others • Currently none of these services are properly equipped for a child with FASD

  29. Schools • The school is often the main service for children with FASD • Most children diagnosed are school age • Children spend the majority of their time at school • These children are already in your schools

  30. Schools • There are models for success but there is no well-defined treatment for children with FASD • Individualized approach for each child • Some commonalities

  31. School services • Requires some professionals present at all times in the schools • The model of bringing specialists in for consultation and then leaving the community will likely not work • Parents will likely need to be involved with their children at school

  32. School services • Suggestions for success • Training/education for teachers and professionals • Learn new techniques for teaching children with FASD • Small class size • Low stimulation classrooms

  33. School professionals • Behavioural specialists available daily (psychoeducator or other professional) • Frequent visits by speech and language pathologist • Availability of school psychologist several times per year

  34. Schools -Communication • Teachers will need close contact with: • Parents • Health care professionals • Social Services

  35. Schools - Funding • More funding is required • Coding • Encourage parents for evaluations • Fundraising • Direct funding from Minister of Education • Networking with other Cree entities

  36. Health Board

  37. Health Board • Professionals who know children are desperately needed • Professionals hired for adults and children will probably focus on the adults

  38. Health Board Priorities • Professional who can assist families of children with behavioural challenges are desperately needed • Speech and Language pathology for children must be available in all communities • Occupational therapy for children must be available in all communities • Child Psychology services

  39. Health Board priorities • Case Managers will be needed for these children • Advocates for the children • Helping to support the families • Assist with communication among all services involved • Follow the child into their adult life • Could be social worker, OT, nurse, psychologist, etc.

  40. DYP/Social Services • These children need a stable home • Shifting the child from one home to another is probably making things worse

  41. DYP/Social Services • DYP Workers • Know how to ask your clients about alcohol use during the pregnancy • Know what to tell them if they are using alcohol or their child was exposed • Document, document, document!!!

  42. Daycares/CRA • Most child are not diagnosed until after starting kindergarten • Already working with several children with special needs • Workers with early childhood education • Role is to identify children at risk and suggest a referral

  43. CHB-CSB-CRA • FASD awareness and prevention • Recruitment and retention of professionals • Additional funding is probably needed, work together • Communication and resource sharing is important • Avoid silo approach

  44. Resources and funding Silo Approach

  45. Resources and Funding Combined approach

  46. CHB-CSB-CRA • The families will be the main caregivers for this child for the rest of their lives • Support • Financial • Parenting skills • Life skills • Respite • Academic • Etc.

  47. Back to the cases

  48. Child #1 • 11 year old boy, grade 6 • Born prematurely • Problems in school • Poor attention span • Not learning well • Hard time making friends • Normal growth and appearance • Confirmed alcohol exposure in utero

  49. Child #1 • Eventually diagnosed with ARND - 2 years after first meeting • School modified plan, resources obtained • Responded to medications for ADD • Family continues to struggle with parenting and stability • Child now in group home and not doing well.

  50. Child #2 • 11 y/o boy • Been in and out of several foster homes • Problems at school • Poor concentration • ? memory problems • Some social difficulties • Face – mild abnormalities • Confirmed alcohol exposure in utero

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