Juvenile-HD

HOME

INDEX Page
Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
SECTION 3 - JHD
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
Resources-Drinks/Shakes
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Celexa/Luvox/Paxil/Prozac/Zoloft
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
What Is AD/HD?

INDEX Page

Attention deficit hyperactivity disorder (AD/HD) is a common childhood behavioral disorder, but it can be difficult to diagnose and even harder to understand. What should you do if your child has AD/HD, and how can you help your child deal with this disorder?

Symptoms and Signs of AD/HD
Children who have AD/HD may know what to do, but they are not always able to complete their tasks because they are unable to focus, are impulsive, or are easily distracted. For example, children with AD/HD often cannot sit still or pay attention in school.

The American Academy of Pediatrics (AAP) estimates that AD/HD affects between 4% and 12% of all school-age children. AD/HD can create problems for these children at home, at school, or in their relationships with friends. According to the National Institute of Mental Health (NIMH), two to three times more boys than girls are affected by AD/HD, but the reason for this difference is not clear.

But what is AD/HD? You may be more familiar with the term attention deficit disorder, or ADD. This disorder was renamed AD/HD in 1994 by the American Psychiatric Association and includes three subtypes:

1. an inattentive subtype (formerly known as attention deficit disorder, or ADD), with signs that include:

  • inability to pay attention to details or a tendency to make careless errors in schoolwork or other activities
  • difficulty with sustained attention in tasks or play activities
  • apparent listening problems
  • difficulty following instructions
  • problems organizing tasks and activities
  • avoidance or dislike of tasks that require mental effort
  • tendency to lose things like toys, notebooks, or homework
  • distractibility
  • forgetfulness in daily activities

2. a hyperactive-impulsive subtype (formerly known as attention deficit hyperactivity disorder, or ADHD) with signs that include:

  • fidgeting or squirming
  • difficulty remaining seated
  • excessive running or climbing
  • difficulty playing quietly
  • always seeming to be "on the go"
  • excessive talking
  • blurting out answers before hearing the full question
  • difficulty waiting for a turn or in line
  • problems with interrupting or intruding

3. a combined subtype, with behaviors that include those from both of the other subtypes and can be seen with or without hyperactivity

To be considered for a diagnosis of AD/HD, a child must display these behaviors before age 7 and the behaviors must last for at least 6 months. The behaviors must also be negatively affecting at least two areas of a child's life (such as school, home, daycare settings, or friendships) for a child to be diagnosed with AD/HD.

All children have difficulty paying attention, following directions, or being quiet from time to time, but for children with AD/HD, these behaviors occur more frequently and are more disturbing to the children and those around them.

To help pediatricians and family doctors, the AAP recently released its first guidelines for the diagnosis and evaluation of AD/HD in children ages 6 to 12.

What Causes AD/HD?
AD/HD has biological origins that are not yet clearly defined. No one cause of AD/HD has been identified, but researchers have been looking at a number of possible
genetic and environmental links. Research shows that some children may have a genetic predisposition toward AD/HD; it is most common in children who have close relatives with the disorder. Recent research also links smoking during pregnancy to later AD/HD in a child, and there is a strong possibility that other substance use may have the same effect.

Although scientists are not sure whether this is a cause of the disorder, they have also found that certain areas of the brain (in the frontal lobes and basal ganglia) are about 5% to 10% smaller in size and activity in children with AD/HD.

Hyperactivity and poor impulse control can also occur in response to significant family stress. Children who have experienced a divorce, a move, a change in school, or other significant life event may display impulsive and overly active behavior, forgetfulness, and absentmindedness, which may be misdiagnosed as AD/HD. It is important to rule out these factors when considering a diagnosis of AD/HD.

Does It Coexist With Other Disorders?
An added difficulty in diagnosing AD/HD is that it often coexists with other problems. Nearly half of all children with AD/HD also have oppositional defiant disorder, which is characterized by stubbornness, outbursts of temper, and acts of defiance.

Mood disorders, such as depression, are commonly seen in children with AD/HD. Some children may have depression as a result of having AD/HD. They feel inept, socially isolated, and frustrated by school failures. A little extra help in social and academic areas can go a long way in helping to alleviate this type of depression.

Other children may have a mood disorder that exists independently of AD/HD, which may require additional psychotherapy or medication.

Many children with AD/HD also have a specific learning disability, which means that they might have trouble mastering language or other skills, such as math, reading, or handwriting. The most common learning problems are with reading and handwriting. Although AD/HD is not categorized as a learning disability, its interference with concentration and attention can make it even more difficult for a child to perform well in school.

Treating AD/HD
AD/HD is often treated with
medication. Psychostimulants, such as methylphenidate, dextroamphetamine with amphetamine, and dextroamphetamine, are the best-known treatments. One of the disadvantages of these medicines is that they require several doses per day (each dose lasts approximately 4 hours). A number of longer-acting preparations of methylphenidate and dextroamphetamine with amphetamine, which last up to 12 hours, are now available.

Psychostimulants often affect children differently, and a child may respond well to one stimulant but not another. When determining the correct treatment for your child, doctors might try various psychostimulants before moving on to other types of medicines. Other medicines are available if the stimulants are not effective for your child or if your child's doctor is treating AD/HD along with another disorder.

Taken in normal doses, stimulants can result in possible side effects, such as decreased appetite, stomachaches, irritability, and insomnia. There's currently no evidence of any long-term side effects. Stimulants have been used for over 50 years in the treatment of AD/HD.

Of all the available therapies for AD/HD, only psychostimulants and behavioral therapy have been shown to be effective in scientific studies (studies in which families have been randomly assigned to treatments, effects have been analyzed by independent observers, and the study has been replicated by another group of researchers at another site).

Medications that can help a child with AD/HD control impulsive behavior and attention difficulties are more effective when combined with behavioral therapy. Behavioral treatments include instructing teachers and parents about the best way to organize the child's environment, give clear directions and commands, and set up consistent rewards for appropriate behaviors and negative consequences for inappropriate ones. It also involves teaching social skills and sports and leisure skills.

Special parenting skills are often required because children with AD/HD may not respond as well to typical parenting practices. Also, because ADHD tends to run in families, parents often have some problems with organization and consistency themselves and need active coaching to help learn these skills. Children who take medications and are involved in programs to promote social behavior do better than those who rely on medication alone.

In addition to these treatments, many alternative treatments are marketed and sold to parents, including herbs, vitamins, minerals, and dietary solutions - but none of these has shown effectiveness in scientific studies. Other scientifically unproven treatments include allergy treatments, chiropractic, sensory integration training, biofeedback and attention training, traditional one-on-one psychotherapy, and visual training by optometrists.

What You Can Do to Help Your Child
AD/HD affects all aspects of a child's home and school life. Specialists recommend parent education and support groups to help family members accept the diagnosis and to teach them how to help the child cope with frustrations, organize his environment, and develop problem-solving skills.

As your child's most important advocate, you should become familiar with his medical, legal, and educational rights. Federal laws mandate education interventions for many children with AD/HD.

Adjustments may be necessary for your child in the classroom. He might be able to pay better attention, for example, if he sits in the front of the room, has an extra set of books at home, and is given additional reminders to complete tasks.

Here are more ideas about how you can help your child, both in the classroom and at home:

  • Modify the environment in an effort to reduce distractions. "Open" classrooms do not work well for children with AD/HD because sitting around tables or in groups is more distracting that sitting in rows. Talk to your child's teacher about decreasing noise and clutter in the classroom.
  • Provide clear instructions. Ask your child's teachers to have your child write down his homework assignments in a notebook, and check that it is complete. Both you and your child's teacher should keep oral instructions brief and provide written instructions for tasks that involve many steps.
  • Focus on success. Provide formal feedback (such as a star chart) to reinforce your child's positive behaviors and reward his progress even if it falls a little short of the goal. A daily checklist carried home from school on which the teacher notes behavior and academics can provide additional structure for the child.
  • Help your child organize. Encourage your child to establish daily checklists, and remind him to check his homework notebook as the end of the school day to make sure that he takes the correct supplies and textbooks home.
  • Encourage your child to control impulses - and ask your child's teacher to reward such behavior. Rewarding a child for raising his hand before speaking in class can go a long way to reduce the disruption of calling out in class.
  • Encourage performance in your child's areas of strength, and provide feedback to him in private. Do not ask your child to perform a task in public that is too difficult.
  • Consult with the school counselor or psychologist to help design behavioral programs to address specific problems in the classroom. Further information on designing behavior programs is available though the U.S. Department of Education's Technical Assistance Center on Positive Behavioral Interventions and Supports (PBIS).
  • Encourage active learning. Teach your child to underline important passages as he reads and to take notes in class. Encourage your child to read out loud at home if fluency and comprehension are a problem.

Updated and reviewed by: W. Douglas Tynan, PhD
Date reviewed: October 2001
Originally reviewed by:
Steve Dowshen, MD, and Paul Robins, PhD

Source:  KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/