International WAGR Syndrome Association

Formerly ReachingOut, The WAGR Network

 

It is important to remember that a given individual with WAGR syndrome may or may not have or develop the condition listed below.  

 
Many children with WAGR syndrome are also diagnosed with behavioral and or psychiatric issues
 


These additional diagnoses may include:


Obsessive Compulsive Disorder (OCD) and other Anxiety Disorders

Autism Spectrum Disorders (including PDD, or Pervasive Developmental Disorder, "Autistic tendencies," Autism)

Sensory Integration Disorder

Depression

ADD/ADHD (Attention Deficit Disorder, with or without hyperactivity)

Please note that more than one condition may be present in an individual child.

The high incidence of Autism Spectrum and Anxiety disorders in children with

WAGR syndrome has only recently been documented, so your physician may not be aware of this information. You may wish to refer them to the following:
"WAGR Syndrome" (from: Management of Genetic Syndromes)

It is important to know that proper diagnosis can be difficult in children with WAGR syndrome because of the complications of mental retardation and visual impairment.
Evaluation for behavioral and psychiatric disorders must be thorough, and must take into account the child's other health issues.
Consultation with a qualified psychiatrist, psychologist, neuropsychologist, behavioral counselor and licensed clinical social workers will help get the best view of a child's individual situation.

Evaluation by a developmental pediatrics team can be very helpful, especially if the child is young and just beginning to show signs of behavioral disturbance (see Early Signs of Autism, below)
Periodic screening for early signs of autism or other behavioral/psychiatric disturbances is important, because early diagnosis and intervention can greatly improve a child's ability to reach his or her potential


Early Signs of Autism

A review was conducted by a 25 member panel which included researchers from the American Academy of Neurology, the American Academy of Pediatrics and more than one dozen other groups. Members reviewed more than 2,700 reports on autism. Based on this review, it is suggested that special attention is recommended if a child:
Is not babbling by 12 months
Is not pointing or using gestures by 12 months
Is not using single words by 16 months
Is not using spontaneous two-word phrases by 2 years
Shows any loss of language or social skills

General Signs of Autism

Symptoms of autism can be mild to severe. Following are common characteristics of autism:
Slow or delayed language development
Lack of facial expressions or gestures
Inappropriate repetition of sounds, words, sentences or whole conversations (This symptom may be immediate or delayed.)
Avoidance of eye contact
Inability to recognize social cues or other people’s feelings
"Tunes out" the world
Preoccupation with specific parts of an object
Highly intolerant of a change in routine.

Treatment

Autism Spectrum Disorders affect each individual differently; no one treatment is effective for all. There are a number of interventions currently used by families of children with ASD with varying degrees of success. Scientific research and best practices include a treatment approach based on applied behavior analysis.

Early Intervention

Research indicates that providing intensive therapy based on applied behavior analysis before a child turns six may improve outcomes and help children with ASD to achieve their maximum potential. Early intensive intervention can be key in improving social, language, and academic skills.

Symptoms of Anxiety Disorders in Children and Adolescents

Panic Disorder -- Characterized by panic attacks, panic disorder results in sudden feelings of terror that strike repeatedly and without warning. Physical symptoms include chest pain, heart palpitations, shortness of breath, dizziness, abdominal discomfort, feelings of unreality, and fear of dying. Children and adolescents with this disorder may experience unrealistic worry, self- consciousness, and tension.

Obsessive-compulsive Disorder (OCD)
-- OCD is characterized by repeated, intrusive, and unwanted thoughts (obsessions) and/or rituals that seem impossible to control (compulsions). Adolescents may be aware that their symptoms don’t make sense and are excessive, but younger children may be distressed only when they are prevented from carrying out their compulsive habits. Compulsive behaviors often include counting, arranging and rearranging objects, and excessive hand washing.

Post-traumatic Stress Disorder
-- Persistent symptoms of this disorder occur after experiencing a trauma such as abuse, natural disasters, or extreme violence. Symptoms include nightmares; flashbacks; the numbing of emotions; depression; feeling angry, irritable, and distracted; and being easily startled.

Phobias
-- A phobia is a disabling and irrational fear of something that really poses little or no actual danger. The fear leads to avoidance of objects or situations and can cause extreme feelings of terror, dread, and panic, which can substantially restrict one’s life. "Specific" phobias center around particular objects (e.g., certain animals) or situations (e.g., heights or enclosed spaces). Common symptoms for children and adolescents with "social" phobia are hypersensitivity to criticism, difficulty being assertive, and low self-esteem.

Generalized Anxiety Disorder
- Chronic, exaggerated worry about everyday, routine life events and activities that lasts at least six months is indicative of generalized anxiety disorder. Children and adolescents with this disorder usually anticipate the worst and often complain of fatigue, tension, headaches, and nausea.
 
What treatments are available for anxiety disorders?
Effective treatments for anxiety disorders include medication, specific forms of psychotherapy (known as behavioral therapy and cognitive-behavioral therapy), family therapy, or a combination of these. Cognitive-behavioral treatment involves the young person’s learning to deal with his or her fears by modifying the way he or she thinks and behaves by practicing new behaviors.
Ultimately, parents and caregivers should learn to be understanding and patient when dealing with children with anxiety disorders. Specific plans of care can often be developed, and the child or adolescent should be involved in the decision-making process whenever possible.

Signs of Depression in Children

Change in personality, such as increased anger, irritability, moodiness, or whining;
Change in appetite, usually a loss of appetite;
Change in sleep patterns, such as difficulty failing asleep, staying asleep, or excessive sleeping;
Loss of energy, or lethargy;
Loss of interest in friends, play, activities, and sports. Or an absence of pleasure derived from relationships;
Low self-esteem, frequently expressed through self-deprecating and negative talk;
Indecisiveness;
Difficulty with concentration (not to be confused with attention deficit disorder);
Feelings of helplessness, occasionally expressed through suicidal talk.

Treatment
- Treatment for depressive disorders in children and adolescents often involves short-term psychotherapy, medication, or the combination, and targeted interventions involving the home or school environment. There remains, however, a pressing need for additional research on the effectiveness of psychosocial and pharmacological treatments for depression in youth. While data from adults indicate the need for maintenance treatment after episode recovery in order to prevent recurrences, the value of such treatment in children and adolescents has yet to be determined through research.

Symptoms Of Attention-Deficit/Hyperactivity Disorder

Inattention (low attention span) Six or more of the following symptoms of inattention have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level: Often fails to give close attention to details or makes careless mistakes in schoolwork or other activities.  Often has difficulty sustaining attention in tasks or play activities.  Often does not seem to listen when spoken to directly  Often does not follow through on instruction and fails to finish schoolwork, chores or duties in the workplace (not due to oppositional behavior or failure to understand instructions.)  Often has difficulty organizing tasks and activities.  Often avoids, dislikes or is reluctant to engage in tasks that require sustained mental effort (such as schoolwork or homework.)  Often loses things necessary for tasks or activities (e.g., toys school assignments, pencils, books, or tools.)  Is often easily distracted by extraneous stimuli.  Is often forgetful in daily activities.  Hyperactivity-Impulsiveness Six or more of the following symptoms of hyperactivity-impulsivity have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level: Often fidgets with hands or feet or squirms in seat.  Often leaves seat in classroom or in other situation in which remaining seated is expected.  Often runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults may be limited to subjective feelings of restlessness.)  Often has difficulty playing or engaging in leisure activities quietly.  Is often "on the go" or often acts as if "driven by a motor."  Often talks excessively.  Often blurts out answers before questions have been completed.  Often has difficulty awaiting turn.  Often interrupts or intrudes on others (e.g., at school or work and at home.) 
Additional Considerations Some hyperactive-impulsive and inattentive symptoms that caused impairment were present before age 7 years. 
Some impairment from the symptoms is present in two or more settings (e.g., at school or work and at home.) 
There must be clear evidence of clinically significant impairment in social, academic or occupational functioning. 
The symptoms do not occur exclusively during the course of a Pervasive Developmental Disorder, Schizophrenic or other Psychotic Disorder and are not better accounted for by another mental disorder
(e.g., Mood Disorder, Anxiety Disorder, Dissociate Disorder or a Personality Disorder.)
For More Information:

Autism & Pervasive Development Disorder (PDD)
http://www.nimh.nih.gov/publicat/autism.cfm  

Obsessive-Compulsive Disorder (OCD)
http://www.nimh.nih.gov/HealthInformation/ocdmenu.cfm  

Attention Deficit Hyperactivity Disorder (ADHD)
http://www.nimh.nih.gov/healthinformation/adhdmenu.cfm 
 

Depression in Children and Adolescents

http://www.nimh.nih.gov/HealthInformation/depchildmenu.cfm  
 
Oppositional Defiance Disorder


MayoClinic.com Tools for healthier lives  
 
 
 
 
The Defiant Child: A Parent's Guide to Oppositional Defiant Disorder
 
by Douglas Riley - Child and Adolescent Psychologist

http://www.amazon.com/Defiant-Child-Parents-Oppositional-Disorder/dp/0878339639/ref=si3_rdr_bb_product/002-2407298-9084866