Introduction
Gordon is an 8-year, 9-month male with a diagnosis of Fetal Alcohol Syndrome (FAS) who visited the community pediatrician regarding caregivers’ concerns about his behavior at both home and school. Gordon is a new patient at the pediatric medical home. Gordon is prone to:
- Daily outbursts of anger with physical aggression toward adults and other children.
- Temper tantrums that occur approximately 10 times daily at home and at school. Reports describe the tantrums as Gordon stomping his feet, yelling/screaming, crying, hitting, and destroying property when he is told “No”. The tantrums also occur when Gordon is asked to stop a preferred task (e.g., turning off the computer after his allotted time is finished) or when a playmate does not want to play with him. It is difficult to calm him after he is upset.
- Being regularly sent home early from school (at least once a week) because of misbehaviors.
- Spending the day sitting in the principal’s office because of disruptive behavior.
- Suspension from the school bus for hitting other children.
Gordon was born prematurely at 31-week gestation and spent six weeks in the Neonatal Intensive Care Unit (NICU). Birth records report prenatal exposure to alcohol.
Genetic testing at 24-months of age was unremarkable. At age 3 Gordon was diagnosed with FAS based upon the history of prenatal alcohol exposure, growth deficits, the presence of dysmorphic cardinal facial features, and neurocognitive deficits. The history of growth delays is monitored by an Endocrinologist.
Gordon has had four previous foster care placements prior to coming into the care of his current foster family at 3.5 years of age. His foster family is planning to adopt him.
Results from recent school neuropsychological and developmental testing indicate that his cognitive abilities are unevenly developed and fall within the Deficient to Low-to-Average range. His scores on measures of cognitive functioning, adaptive functioning, behavior, and academics, when compared to age-matched peers, were classified as:
- Low to Average verbal abilities
- Deficient working memory, visuospatial skills, speed of processing, and graphomotor skills
- Low to Moderately Low scores in adaptive functioning
- Clinically significant ratings for behavior and attention problems given by caregivers and teachers
- Deficient academic skills (reading, spelling, and mathematics)
A psychiatrist has prescribed medications to address concerns with Gordon’s attention and behavior. Gordon’s foster family is uncertain if the medications have been effective. It is not known if the psychiatrist is aware of the FAS diagnosis, nor if this was a one-time consultation or if the psychiatrist is performing medication management. Gordon is not receiving other therapeutic services.
Gordon attends second grade at a public school and is eligible for special education under the classification of Other Health Impairment (OHI). Instruction in classes is co-taught by a special education teacher and a general education teacher. He receives no other school-based services despite academic failure. Additionally, the school has no behavior management plan for him.
Contributing Factors to an FASD Diagnosis
Key Facts
- Prenatal exposure to alcohol and a diagnosis of FAS
- Normal genetic testing at 24-months of age
- Growth delays that are monitored by an Endocrinologist
- Multiple foster home placements; Gordon’s current family plans to adopt him
- Results from recent testing confirm neurobehavioral deficits consistent with the effects from prenatal alcohol exposure
- Behavior problems including frequent tantrums, anger outbursts with physical aggression, easily being distracted, problems coping with disappointment, inability to negotiate peer conflict
- Disruptive behavior that results in being sent home from school and suspension from the bus
- Receives medication therapy from a psychiatrist who is not boarded in Child and Adolescent psychiatry; no other community-based therapeutic services
- Getting special education in the second grade
Demographic Information
Male, 8 years, 9 months
Height: 3rd percentile at 1 year; 144.5cm currently (97th percentile)
Weight: 3rd percentile at 1 year; 34.92kg currently (75-90th percentile)
Head Circumference: 47cm (<3rd percentile)
Current History
Passed both Vision and Hearing Screenings. Current medications include fluoxetine 5 ml, clonidine 1 mg, and risperidone 2 mg prescribed by a psychiatrist who is not boarded in Child and Adolescent psychiatry.
Medical History
Diagnosis/Illness: Abnormal sacral dimple, low lying conus
Age at Diagnosis: 11 months
Treatment Plan (including medications):
- Surgery for spinal cord de-tethering
- Repeated imaging in the last year: stable
- Continue monitoring
Diagnosis/Illness: Genetic testing; FAS
Age at Diagnosis: 2 years
Treatment Plan (including medications):
- Normal microarray
- Negative for Fragile X
- Clinical features meet diagnostic criteria for FAS
Diagnosis/Illness: Growth delays
Age at Diagnosis: 3 years
Treatment Plan (including medications):
- Monitor by Endocrinologist
Diagnosis/Illness: FAS
Age at Diagnosis: 4 years
Treatment Plan (including medications):
- Continue with Endocrinologist to monitor growth
- Referral to a therapist for behavioral management
- Child Find to local public school for evaluation for consideration for special needs pre-kindergarten, occupational therapy, social skills, and behavioral support
Pertinent physical examination findings: Microcephaly; cardinal dysmorphic facial features: short palpebral fissures, smooth philtrum, thin vermillion border; and abnormal sacral dimple.
Developmental History/Concerns
- Motor function (poor suckling, writing skills)
- Neurocognitive deficit (uneven pattern of cognitive development)
- Attention Deficit Hyperactivity Disorder
- Oppositional Defiant Disorder
- Hyperactivity
- Social Skills (poor negotiation and conflict resolution with peers and adults)
- Visual/spatial reasoning (poor understanding of his/her body in space, trouble copying visual patterns, disorganized/poorly planned drawings, problems lining up numbers)
- Self-regulation deficits (easily overwhelmed, anger outbursts, prolonged temper tantrums, reactivity, and physical aggression)
- Cognitive functioning deficient in low-to-average range; academic failure and behavior problems at school; information about early milestones was unavailable.
Living Situation:
- Married Parent Household
- Adoptive/Foster Care
Family Strengths:
- Knowledge of community support systems
- Family support in time of need
- Safe home environment
Pertinent social history: Gordon was in the NICU for six weeks. Upon release, he was placed into foster care. He has had four foster care placements prior to coming into the care of his foster family at 3.5-years of age. His current foster family plans to adopt Gordon.
Psychiatric Diagnoses
- Positive screen for ADHD on Vanderbilt questionnaire
- No known mental illness or behavioral health diagnoses
Provider Plan
- Transfer of care from another pediatrician
- Referrals to OT/PT/ST
- Referrals to a Geneticist for examination and testing, Developmental Pediatrics, Neuropsychologist, and Nutritionist
Considerations for Improving Continuity of Care in the Pediatric Medical Home
Countering Negative Stigma for a Child and Family with an FASD Diagnosis
Although a diagnosis of an FASD can confer stigma to those unfamiliar with this diagnosis, a child with an FASD can potentially become stigmatized as a “bad child.” Most children with an FASD grow up chastised for behaviors that they have difficulty controlling. A diagnosis of a brain-based, neurological disorder (FASD) provides an opportunity to educate Gordon’s parents and teachers that Gordon requires support services for his disability. With Gordon’s adoptive parents, the stigma of prenatal alcohol exposure that must be navigated when working with a birth mother is not present. An FASD diagnosis allows education to help both Gordon and his parents better understand his developmental and behavioral challenges.
Educating parents about the challenges of children with an FASD is one of the most important reasons for assessing a child and making the FASD diagnoses. Behaviors that were seen as moral failings (“He just wants to do what he wants to do.” or “He never listens.”), can now be seen as neurological challenges that require enhanced environmental supports. These supports include highly structured home and school environments, consistent routines, and most importantly, reasonable behavioral, intellectual, emotional, and social expectations. A child with an adaptive function of 60, is going to function at the age equivalence of a child that is two-thirds their chronological age. This expectation needs to be understood by all individuals caring for the child.
Prenatal alcohol exposure causes a static encephalopathy that creates a life-long condition. The focus of care should be to ascertain family and child strengths to develop treatment plans and minimize adverse outcomes. It helps to reframe the parent’s assessment from “he won’t do…” to “he can’t do…” using the organic brain injury as a rationale for the challenges and using enhanced environmental supports to help modify the child’s behavior. A diagnosis of an FASD enables an understanding of developmental challenges and appropriate interventions. Providing appropriate therapies and support systems can improve behavioral outcomes that, in turn, can potentially mitigate greater stigmatization from behavioral manifestations that result from prenatal alcohol-induced brain damage.
Partnering With a Family to Provide Ongoing Support
A pediatricians educated about FASDs is often the only person that understand the challenges that a child living with an FASD and their family members experience. The pediatrician can play an important role through empathic listening to Gordon and his parents about his difficulties, acknowledging the hardships that come with this disability, and reassuring Gordon’s family with advocacy and support systems.
Even with appropriate interventions, an FASD does not typically improve with time. Behaviors can become more challenging as adaptive function plateaus while age-related expectations of behavior increase with chronological age. Children with an FASD often seem younger than their chronological age, are easily bullied, and are susceptible to the influence of peers or adults. Children with an FASD often engage in high-risk behaviors that increase the potential for self-harm or victimization.
It is appropriate for the pediatrician to discuss with Gordon’s family the life-long challenges that Gordon will experience. View details in ND-PAE Age Dependent Symptom Diagnosis Guidelines. A trajectory of increasing neurodevelopmental difficulties is predictable and should be discussed from an early age. This allows the pediatrician to join Gordon’s parents in foreseeing hardships, implementing safety plans, and sharing in challenges and successes. The primary care pediatric clinician can also serve in the important role of educator to other caregivers, teachers, therapists, and support teams about the challenges of children living with an FASD.
Ensure Appropriate School Services for a Patient
Many parents prefer not to discuss a child’s FASD diagnosis with a school for fear of stigmatizing the child. The pediatrician can discuss Gordon’s FASD diagnosis with his parents and encourage them to inform the school. This provides an opportunity to educate teachers about an FASD and, specifically, Gordon’s challenges that come with that diagnosis. Gordon will learn differently. Education about FASDs can also lead to teachers joining advocacy efforts of pediatricians and families. The experience of teaching a child with an FASD enables a teacher to educate her peers and administrators about the learning challenges that a child living with an FASD experiences.
As children living with an FASD learn differently, it is essential to share these diagnoses and psychological evaluations with special educators to ensure that Gordon and other affected children receive the individualized education and services that they require.
If Gordon’s parents prefer not to share the FAS diagnosis with Gordon’s school, a diagnosis of neurodevelopmental disorder or static encephalopathy can be used to emphasize the brain-based neurological difficulties that are manifested in learning and behavioral challenges. Emphasize the brain-based nature of the learning and behavioral challenges to the school educational teams. Just as a child with cerebral palsy who requires a wheelchair cannot be blamed for failing to use stairs at school, a child with an FASD who requires additional supports because of learning and behavioral challenges should not be blamed for the challenges they face both at home and school.
Referrals to Support the Child and Family
The pediatrician can refer Gordon for occupational, physical, and/or speech therapy. Occupational therapists are especially helpful in addressing many of the sensory integration difficulties that children with an FASD experience.
Families may require extra in-home support from a home health aide. Encourage Gordon’s family to consider an application to the Supplemental Security Income disability program that provides assistance to people with disabilities. They can also pursue eligibility for state-supported services through the Office for Persons with Developmental Disabilities. In many states, a diagnosis of FAS is the only FASD that qualifies for eligibility for this service. Pediatricians can join other advocates in changing their state’s eligibility criteria to include all FASDs.
Last Updated
11/29/2021
Source
American Academy of Pediatrics