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FETAL ALCOHOL SPECTRUM DISORDER
Presentation for the Cree Nation
Kent Saylor, MD
January 15, 2013
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
Child #1
11 year old boy, grade 6 Born prematurely Problems in school
Poor attention spanNot learning wellHard time making friends
Normal growth and appearance Confirmed alcohol exposure in utero
Child #2
11 y/o boy Been in and out of foster care Problems at school
Poor concentration? memory problemsSome social difficulties
Face – mild abnormalities Confirmed alcohol exposure in utero
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 stillNot learning well
Normal growth and appearance Confirmed alcohol exposure in utero
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?
Terminolgy
FASD
Alcohol-relatedNeurodevelopmentalDisorder(ARND)
Partial Fetal AlcoholSyndrome(pFAS)
Fetal Alcohol Syndrome(FAS)
“FASD” is not a diagnosis
Older terms
FAE
ARBD
FASD
There are strict criteria for diagnosis for all 3 official diagnosesGrowthFacial featuresBrain damage*Alcohol use during the pregnancy*
FASD
All children with FAS, pFAS or ARND have:Alcohol exposure during the pregnancyBrain damage
This is a life-long condition!!
Brain Damage
ARND = pFAS = FAS
http://minnesota.publicradio.org/display/web/2007/09/06/fasd6http://www.fascme.com/c104.php
Most common diagnosis
ARND
pFAS
FAS
The majority of children affected by alcohol exposure have ARND and look totally normal!
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:DoctorPsychologist (neuropsychologist)Occupational TherapistSpeech and Language Pathologist
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.
Diagnostic Team for FASD Doctor
Must have knowledge about FASDKnow the criteria for FASDExtra training for diagnosisBe competent in making the measurementsCannot make the diagnosis alone
Diagnostic team
Psychologist Have knowledge about FASDKnow the criteria for FASDExtra training for diagnosisBe able to test all brain domains for
evidence of brain damageCannot make the diagnosis alone
Occupational TherapistMust have knowledge about FASDKnow the criteria for FASDExtra training for diagnosisKnow which tests to useCannot make the diagnosis alone
Speech and Language PathologistMust have knowledge about FASDKnow the criteria for FASDExtra training for diagnosisKnow which tests to useCannot make the diagnosis alone
Barriers to diagnosis
There is no multidisciplinary diagnostic clinic in Quebec!
Barriers to diagnosis - Quebec Doctors and psychologists
Most are not qualified to do an evaluationMost have not taken the extra trainingMost do not know the exact criteria Most do not know who to refer toSome may try to make the diagnosis alone
which can be dangerous
Barriers to diagnosis-Quebec Occupational Therapists and Speech
and Language PathologistsMost have not taken the extra trainingMost do not know the exact criteria Most do not know what to test for
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
Cree Territory - Barriers
Speech and Language PathologyNone in the territory for children 0-5 yearsNone have the expertise to evaluate
children for FASD
Occupational Therapy & PsychologyLimited resources in the territoryNone have the expertise to evaluate
children for FASD
Cree Territory - Barriers
DoctorsMost do not know about FASDMost 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!
Resources needed!
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
Resources in the communities
There are many entities who must be involved in raising children with FASDParents SchoolsHealth careDaycareOthers
Currently none of these services are properly equipped for a child with FASD
Schools
The school is often the main service for children with FASDMost children diagnosed are school ageChildren spend the majority of their time at
schoolThese children are already in your schools
Schools
There are models for success but there is no well-defined treatment for children with FASD
Individualized approach for each child
Some commonalities
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
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
School professionalsBehavioural specialists available daily
(psychoeducator or other professional)
Frequent visits by speech and language pathologist
Availability of school psychologist several times per year
Schools -Communication
Teachers will need close contact with:Parents
Health care professionals
Social Services
Schools - Funding More funding is required
Coding ○ Encourage parents for evaluations
Fundraising
Direct funding from Minister of Education
Networking with other Cree entities
Health Board
Health Board
Professionals who know children are desperately needed
Professionals hired for adults and children will probably focus on the adults
Health Board Priorities
1. Professional who can assist families of children with behavioural challenges are desperately needed
2. Speech and Language pathology for children must be available in all communities
3. Occupational therapy for children must be available in all communities
4. Child Psychology services
Health Board priorities
Case Managers will be needed for these childrenAdvocates for the childrenHelping to support the familiesAssist with communication among all
services involvedFollow the child into their adult lifeCould be social worker, OT, nurse,
psychologist, etc.
DYP/Social Services
These children need a stable home
Shifting the child from one home to another is probably making things worse
DYP/Social Services
DYP WorkersKnow 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!!!
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
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
Resources and funding
Child
CHB
Parent
CRA
CSB
Silo Approach
Resources and Funding
CRA CSB CHB
Family
Child
Combined approach
CHB-CSB-CRA
The families will be the main caregivers for this child for the rest of their livesSupport
○ Financial○ Parenting skills○ Life skills○ Respite○ Academic○ Etc.
Back to the cases
Child #1
11 year old boy, grade 6 Born prematurely Problems in school
Poor attention spanNot learning wellHard time making friends
Normal growth and appearance Confirmed alcohol exposure in utero
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.
Child #2
11 y/o boy Been in and out of several foster homes Problems at school
Poor concentration? memory problemsSome social difficulties
Face – mild abnormalities Confirmed alcohol exposure in utero
Child #2
Completed all the testing after 10 months
Does not fit criteria for FAS, pFAS or ARND
Confirmed ADHD Doing well in stable foster family
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 stillNot learning well
Normal growth and appearance Confirmed alcohol exposure in utero
Child #3 Still awaiting for a full evaluation after 18
months Family has missed several
appointments No family stability, child goes off and on
meds for ADHD Not getting services Cannot get a straight answer of how he
is doing at school
Conclusion
FASD is not a diagnosis
The 3 accepted terms are FAS, pFAS and ARND
All three are equally severe in terms of brain damage
. . . conclusions
Diagnosis is challenging
The process to make a diagnosis is currently not ideal
We are working on a plan to create a multidisciplinary team
. . .conclusions
The children and parents will need multidisciplinary support in the communities for life
. . . conclusions
Major changes will need to take place to identify and support these children and their families
Cree School BoardCree Health BoardCree Regional AuthorityOther
Planning for these changes should start now
Plan to expand services as more children are diagnosed
Thank you