home contact us search       The information below is for general information only and is not intended to provide specific advice. You should discuss all healthcare questions and concerns with your doctor. ----------------------------------------------------------------------------------------------- MISBEHAVIOR OR NEUROBEHAVIORAL DISORDER? Making sense of behavioral concerns in young children with DS Behavior Spectrum Q1: Which behaviors are considered typical for preschool children (<5yr) with DS Behaviors considered typical in preschool child* Separation or stranger-anxiety, bedtime problems Increased motor activity, very busy Deliberate misbehaving for social attention Tantruming when limits are set or privileges denied *These are best managed using firm discipline and behavior management Behaviors which may be character-traits of many children Routine-oriented, resistant to change Stubborn, persistent Sociable, affectionate Q2: What other behaviors are seen in preschool children (<5yr) with DS Behaviors seen in some children or some situations Repetitive motor acts (WHICH ARE OCASSIONAL AND EASY TO INTERRUPT) Waves objects, stares at hands, hums, grinds teeth, rocks - especially when bored Tenses-up, grimaces, makes happy noises, shakes & waves arms - especially when excited Hypersensitive to touch (haircuts, tooth-brushing); sounds (loud noises, chaos) Food refusal -textures Q3: What behaviors are NOT typical for preschool children (<5yr) with DS Behaviors which result in significant interference with learning, socialization or safety Repetitive motor acts (WHICH ARE FREQUENT AND DIFFICULT TO INTERRUPT) Body rocking, hand flapping, dangling strings-beads-belts, prolonged staring, throaty noises Inability to focus, attend to tasks or organize play activities Little interest imitating other children at play Inability to understand spoken words High motor activity resulting in unsafe or risky behavior- climbing, running off Behaviors which occur across multiple environments home-school-community Behaviors resulting in physical harm to self or others Self: Head banging or hitting, slapping, biting, poking, scratching or skin-picking Others: Hitting, kicking, hair-pulling or biting Property destruction: throwing or breaking objects Dual Diagnosis: Neurobehavioral Disorders Q1: What is meant by a dual-diagnosis Refers to a person with Mental retardation AND a psychiatric or neurobehavioral disorder. Approximately 15% of children with DS may have a dual-diagnosis Q2: What features distinguish a psychiatric or neurobehavioral disorder from more common "misbehavior" or problem behavior The behaviors may be particularly frequent, severe and/or rapidly getting worse Severity: self-injury or injury to others is occurring Duration: behaviors have been present for many months Intensity: behavioral episodes are getting worse - more frequent or longer lasting There are other signs (clues) to look for besides the behavior itself Physiologic symptoms are often present Abnormal: sleep pattern, appetite, activity-level, fluctuating mood (instability or irritability), abnormal response to sensory stimuli Neurocognitive changes are often present Abnormal: attention, gaze-preference, initiative-motivation, cognitive planning-organization, play routines, social interaction or actual loss of established skills, developmental regression Family history of psychiatric disorder in grandparents, parents, siblings, aunt-uncles, 1st-cousins is present Bipolar disorder, Schizophrenia, OCD, Anxiety, Autism Q3: What is meant by a co-morbid behavioral condition A co-morbid condition is when the primary psychiatric condition has other distinguishing features which can complicate the diagnosis, management and outcome, for example: Autism with self-injury ADHD with oppositional-defiant behavior Disruptive behavior with ADHD and anxiety Obsessive-compulsive disorder with tics ACTION PLAN If you suspect the presence of a neurobehavioral disorder the following types of evaluations should be considered: Developmental or Behavioral Pediatrician, Child Psychologist, Behavioral Psychologist or Child Psychiatrist. In many circumstances it is advisable to obtain an informed opinion independent of your child's school program. DISCLAIMER The information presented in this document is for informational purposes only. It is not to be used as a substitute for a comprehensive medical-mental health evaluation nor is it intended to be used to establish a specific medical, behavioral or psychiatric diagnosis in any particular individual. Due to the complexity inherent to these conditions an individual clinical evaluation(s) is necessary to arrive at an accurate working diagnosis and management plan. NEUROBEHAVIORAL DISORDERS IN CHILDREN WITH DS Considering medication management Dual Diagnosis: Neurobehavioral Disorders in Children Q1: What is meant by a dual-diagnosis Refers to a person with Mental retardation AND a psychiatric or neurobehavioral disorder. Approximately 15% of children with DS may have a dual-diagnosis Q2: What features distinguish a psychiatric or neurobehavioral disorder from more common "misbehavior" or problem behavior The behaviors may be particularly frequent, severe and/or rapidly getting worse Severity: self-injury or injury to others is occurring Duration: behaviors have been present for many months Intensity: behavioral episodes are getting worse - more frequent or longer lasting There are other signs (clues) to look for besides the behavior itself Physiologic symptoms are often present Abnormal: sleep pattern, appetite, activity-level, fluctuating mood (instability or irritability), abnormal response to sensory stimuli Neurocognitive changes are often present Abnormal: attention, gaze-preference, initiative-motivation, cognitive planning-organization, play routines, social interaction or actual loss of established skills, developmental regression Family history of psychiatric disorder in grandparents, parents, siblings, aunt-uncles, 1st-cousins is present Bipolar disorder, Schizophrenia, OCD, Anxiety, Autism Q3: What is meant by a co-morbid behavioral condition A co-morbid condition is when the primary psychiatric condition has other distinguishing features which can complicate the diagnosis, management and outcome, for example: Autism with self-injury ADHD with oppositional-defiant behavior Disruptive behavior with ADHD and anxiety Obsessive-compulsive disorder with tics When to consider medication management Q1: When might medications be unlikely to help If one or more is true Only minor or occasional behavior problems exist - especially in a child under 3 yrs Behaviors are significant but limited only to a specific environment (disruptive at home, but not at school); or only in the presence of a specific person, (hits mother but not father) or situation, (becomes agitated-disruptive when exposed to loud noise or chaos Physiologic or neurocognitive changes are NOT present A medical condition exists which is triggering or maintaining the behavior, such as: pain or physical discomfort (ENT, skeletal, gastric, dental); if an untreated hearing or visual loss, sleep-apnea, hypothyroidism or hyperthyroidism is present. Q2: When might medications be more likely to help If one or more is true A major psychiatric disorder is present: Bipolar disorder, Obsessive-compulsive disorder, Depression, Psychosis, Autism-spectrum disorder An other psychiatric disorder is present (ADHD, Anxiety, Oppositional-defiant disorder, Disruptive behavior disorder) resulting in significant academic or social impairment Physiologic or neurocognitive changes are VERY prominent Person did well on medications previously - but they were stopped There has been an inadequate response to other treatments (behavioral management, sensory therapy, functional communication) *COMMENT: It is critical that behavioral and functional communication treatments be used in conjunction with medications in order to have the best chance for long-term success Goals of Medication Management Q1: What is a realistic expectation when using the correct medication(s) One or more of the following: Improvement in physiologic symptoms (above) Improvement in activity-level, impulse control, attention-focus, cognitive-organization, mood-anxiety, repetitive behaviors Improved self-regulation may result in reduced intensity, severity or duration of certain problem behaviors (self-injury, aggression and disruptive behaviors) Q2: What is probably NOT a realistic expectation even when using the correct medication(s) One or more of the following: Complete elimination of all behaviors Immediate, positive and lasting response to a single medication Complete absence of side-effects Q3: How to determine the goal(s) of medication treatment Determine Urgency Decide if symptoms require prompt, immediate control- is person a danger to self or others? Is this an elective medication trial intended to determine if medications can help the situation? These factors influence the class and potency of the medication chosen and rate of dosage increases Determine Priorities Decide which physiologic symptoms or target behaviors are most important to control Priorities may change over time as some symptoms may respond and others not These factors influence the class and dosage of medication chosen Monitoring Medication Usage Q1: How to evaluate if medication is helping Collect baseline behavior & symptom severity data Use standardized questionnaires, rating scales or designation of target symptoms Look for changes at regular intervals Monitor effects on general function - alertness, energy-level, adaptive function, self-care & learning Do behaviors return or worsen when medication is missed, reduced or discontinued Q2: How to monitor for medication related side-effects Anticipate certain SE and know what to look for in advance Educate yourself about the medications being used Stay in touch with the prescribing physician Do NOT miss your scheduled follow-up appointments Monitor for SE regularly and systematically Get lab studies at regular intervals as required Q3: How do we minimize the risk of side-effects Use a simple, conservative dosing strategy especially for elective medication trials Begin at lower than effective dose Increase dosage slowly until physiologic symptoms or target behaviors improve If undesirable effects appear do not continue to increase, return to the last previously tolerated dosage or consider stopping. Communicate with the prescribing physician Use a simple dosing schedule (once-twice daily) if possible Start sedating medications in PM (bedtime) Start new medications on the weekend or vacation (when you can observe effects), NOT a school day ACTION PLAN If you suspect the presence of a psychiatric or neurobehavioral disorder and wish to consider the use of medications you need to consult with your pediatrician or primary care physician, a developmental or behavioral pediatrician and/or child psychiatrist with expertise in developmental disability. It is advisable to obtain an informed opinion independent of your child's school program. If these services are not readily available in your community consider an evaluation at an academic medical center with a Down Syndrome Clinic, Mental Health Clinic and Behavioral services DISCLAIMER The information presented in this document is for informational purposes only. It is not to be used as a substitute for a comprehensive medical-mental health evaluation. This information is not intended to be used to establish a specific medical, behavioral or psychiatric diagnosis in any particular individual, nor is it intended to recommend undertaking a medication trial in any individual. It is critical that behavioral and functional communication treatments be used in conjunction with medications in order to have the best chance for long-term success. ----------------------------------------------------------------------------------------------- 1)  Is type 1 or type 2 diabetes mellitus more common in children and adolescents who have Down syndrome? Type 1 diabetes mellitus is more common in children and adolescents who have Down syndrome. This type of diabetes is not due to obesity. This type of diabetes can only be treated with insulin injections. The increased prevalence of obesity in the general pediatric population has caused an increased incidence of type 2 diabetes mellitus. This type of diabetes can be treated with insulin and/or pills. 2)  What are the symptoms of diabetes mellitus? The classic symptoms include increased thirst, urination, appetite, and weight loss. A classic occurrence is bedwetting and/or waking up in the middle of the night to urinate and/or obtain a drink in a child who previously slept through the night. These symptoms can be seen in individuals who have type 1 or type 2 diabetes mellitus. 3)  My child is overweight, what can I do? Weight issues are common in individuals who have Down syndrome. Due to the medical problems associated with obesity (high blood pressure, diabetes, irregular menses, heart disease, and elevated cholesterol) it is important to work with your family member to maintain a healthy weight. Take a close look at your child's diet: eliminate sweetened beverages such as juices and soda, provide low fat milk (1% or skim milk), minimize the number of times per week your child eats at fast food restaurants, limit junk food, provide nutritionally health snacks such as fruit and vegetables. If possible discuss your child's diet with a nutritionist. Bring a typical 3-4 day food dairy to the nutritionist. The diary should contain detailed information about the type and quantity of food and beverages that your child consumes. Exercise is a very important component of weight loss. Find an activity that your child enjoys (i.e.). bicycling, swimming, sports and have them engage in the activity as often as possible. 4)  Is my child's weight problem due to a thyroid disorder? Weight gain due to hypothyroidism (under active thyroid) occurs when an individual is profoundly hypothyroid and typically causes approximately a 5 pound weight gain. The weight gain is due to edema (accumulation of fluid) and is readily lost once the individual's thyroid function normalizes. Excessive weight gain is usually not due to hypothyroidism. An overactive thyroid, hyperthyroidism typically causes weight loss. Some individuals with hyperthyroidism can compensate for the increased metabolic demands and gain weight. Testing an individual's thyroid function can easily be done with a blood test. If thyroid function is normal and the child has normal growth then an endocrine cause for weight gain is unlikely.       GENERAL INFO & NEW PARENT PACKAGE IN-DEPTH RESOURCES PRESENTATION CENTER HELPFUL LINKS