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