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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

Alcohol-Talking To Your Child

More than 54% of the children surveyed in a recent study by the federal government had tried alcohol by the time they reached eighth grade. Experts suggest that parents play the most important role in determining how children handle the temptation to drink alcohol. In order to help prevent alcohol abuse in children, parents should begin discussing alcohol use and abuse with their children at an early age and continue openly communicating throughout their children's development. Communication Is the Key "Create an atmosphere early on where it is OK to ask questions and where no question is dumb," Linda Quistad-Berg, a consultant with the Minnesota Child and father Prevention Resource Center, suggests. "This sets the stage for perhaps more important questions about alcohol later on." Preschoolers Alcohol education may seem unnecessary for preschoolers, but the attitudes and habits that are formed during this stage can greatly influence the decisions children make later. Although 3and 4-year-olds are not ready to learn statistical facts about alcohol or other drugs, they can begin to develop the decisionmaking and problem-solving skills they will need later. For example, begin to allow your toddler to select what she wants to wear. Try not to worry if the choices don't quite match. Instead, let your child know you think she is able to make good decisions. Encourage her to perform age-appropriate tasks and let her know what a big help she is. Ages 4 to 7 Children in this stage still think and learn primarily by experience and they don't have a good understanding of things that will happen in the future. Therefore, discussions about alcohol should be kept in the present and related to people and events your child knows about. Alcohol educators often call those opportunities "teachable moments." For example, watching TV with your child can provide a chance to talk about advertising messages. Ask your child questions about the ads and encourage her to ask questions as well, such as "Do you think drinking beer makes people more popular or good-looking?" Most children at this age are interested in how their bodies work, so this is a good time to talk about maintaining good health and avoiding substances that might harm the body. Ages 8 to 11 The later elementary school years are crucial in influencing decisions about alcohol use. Children at this age love to learn facts, especially strange ones, and they are eager to learn how things work and what sources of information are available to them. Openly discuss facts about alcohol: the long- and short-term effects and consequences of its use, the effects of alcohol on different parts of the body, and why it's especially dangerous for growing bodies. Friends become very important at this age. A child's interests may be determined by what her group of friends thinks. Teach your child to say "no." Casual discussions about alcohol and friends can take place at the dinner table as part of your normal conversation: "I've been reading about young kids using alcohol. Do you ever hear about kids using alcohol or other drugs in your school?" Ages 12 to 17 By the time your child is a teenager, she should have learned the facts about alcohol, and she should have been exposed to your attitudes and beliefs about substance abuse. Your aim should be to reinforce what has already been taught and to keep the lines of communication open. During the teen years, your child is more likely to engage in risky behaviors. Her increasing need for independence may make her to want to defy your wishes as a way of asserting her freedom. But the chances of communicating positively with your child increase if she feels that you accept and respect the person she is now: a person who wants to be liked and accepted by her peers and who needs a certain degree of privacy and trust. You can help show your respect by avoiding discipline methods such as excessive preaching and threats. "Teens often act like they don't need affection, but they do," Quistad-Berg says. "Say, 'I love you, and I am concerned about you. That's why I want you to know about this or why I want to talk about this.'"

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

Teaching Your Child to Say No You can teach your child various approaches to deal with offers of alcohol. Teach your child to ask questions. If an unknown substance is offered, she can ask, "What is it?" or "Where did you get it?" Teach your child to explain why she is not interested in drinking, with statements such as "I'm seeing a movie that night" or "I don't want to get a hangover." Teach your child to suggest other things to do. If a friend offers alcohol, she can offer other alternatives like going out to dance or renting a movie. Remind your child that she should leave a situation if she doesn't feel comfortable with what's going on. Make sure she has money for transportation or a phone number where she can reach you or another responsible adult. Teach your child never to accept a ride from someone who has been drinking. Some parents find that offering to pick up their children if they are in an uncomfortable situation - no questions asked - helps encourage kids to be honest and call when they need help. Risk Factors Research suggests that periods of transition such as the onset of puberty or a parents' divorce can lead to alcohol use. Parents should teach their children that although life can sometimes be upsetting or stressful, drinking alcohol to escape difficult times can make a bad situation much worse. Children who have problems with self-control or low self-esteem are more likely to abuse alcohol. These kids may not believe that they can handle their problems and frustrations without taking something to make them feel better. Children who lack a sense of connectedness with their families or who feel they are different in some way, such as their appearances or economic levels, may also be at risk. Children who find it hard to believe in themselves desperately need the love and support of parents or other family members. In fact, not wanting to harm the relationships between themselves and the adults who care about them is the most common reason that young people give for not using alcohol and other drugs. General Tips Fortunately, there is a lot that parents can do to protect their children from using and abusing alcohol: Always be a good role model. Consider how your use of alcohol or medications may influence your child. You may want to consider offering only non-alcoholic beverages at parties and other social events to show your children you don't need to drink to have fun. Educate yourself about alcohol so you can be a better teacher to your child. Read and collect information that you can share with your child and other parents. Try to be conscious of how you can help build your child's self-esteem. For example, children are more likely to feel good about themselves if you emphasize their strengths and positively reinforce healthy behaviors. Teach your child to manage stress in healthy ways, such as by seeking help from a trusted adult or engaging in a favorite activity. Love your child unconditionally. Updated and reviewed by: Kim Rutherford, MD Date reviewed: August 2001 Originally reviewed by: Steve Dowshen, MD, and Jonathan Schneider, DO
Source: KidsHealth 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

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