Juvenile-HD

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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
Stress

INDEX Page

Stress for a child can be natural living in a family with Huntington's Disease.  Depending on the age of the child, stress can come from feeling alienated or unloved by the parent with HD, from feelings of being ignored by the caregiving parent, from the knowledge that they are at-risk for the disease, or in some cases compounded by the child who has to help care for a parent with the disease or all above. 
 
Speak to your children often about their feelings.  Dedicate time once a week, at least,  to spend just with them.  Reassure them they are still very important to you and that you will be there for them. 
 
Watch your child for signs of stress and get help for them immediately if you see them.

As providers and caretakers, adults tend to view the world of children as happy and carefree. After all, what could kids possibly have to worry about?

Plenty! Even very young children have worries and feel stress to some degree.

Stress, in a nutshell, is a function of the demands placed on us and our ability (or sometimes our perceived ability) to meet them. child in knotsPressures often come from outside sources (family, friends, school), but they can also come from within. The pressure we place on ourselves can be most significant, because there is often a discrepancy between what we think we ought to be doing and what we are actually doing in our lives.

Stress can affect anyone - children included - who feels overwhelmed. A 2-year-old, for example, may be anxious because the person she needs to help her feel good - her parent - isn't there enough to satisfy her. In preschoolers, separation from parents is the greatest cause of anxiety. 

As children get older, academic and social pressures (especially the quest to "fit in") create stress. In addition, well-meaning parents sometimes unwittingly add to the stress in their children's lives. For example, high-achieving parents often have great expectations for their children, who may lack their parents' motivation or capabilities. Parents who push their child to excel in a sport or activity, or who enroll their child in too many activities, may also cause unnecessary stress and frustration if their child doesn't share their goals.  

Your child's stress level may be raised by more than just what's happening in her own life. Does she hear you talking about troubles at work, worrying about a relative's illness, or fighting with your spouse about financial matters? Parents need to be careful how they discuss such issues when their children are near because children will pick up on their parents' anxieties and start to worry themselves.

The events of September 11, 2001 and the changes in our world since then have also added to the stress of many children - and not just those who were directly affected by the tragedy. Children who watch replays of the disturbing images on TV or hear talk of plane crashes, war, and bioterrorism may worry about their own safety and that of the people they love. Talk to your child about what she sees and hears, and monitor what she watches on TV so that you can help her understand what's going on and reassure her that she's safe.

Also consider complicating factors, such as an illness, death of a loved one, or a divorce. When these factors are added to the everyday pressures kids face, the stress is magnified. Even the most amicable divorce can be a difficult experience for children, because their basic security system - their family - is undergoing a tough change. Separated or divorced parents should never put kids in a position of having to choose sides or expose them to negative comments about the other spouse. Parents should always operate in the best interest of their child.

Recognizing the Symptoms
It's not always easy to recognize when your child is "stressed out." Short-term behavioral changes, such as mood swings, acting out, changes in sleep patterns, or
bedwetting, can be indicators of stress. Some children experience physical effects, including stomachaches and headaches. Others have trouble concentrating or completing schoolwork. Still others become withdrawn or spend a lot of time alone. Younger children may show signs of reacting to stress by picking up new habits like thumb sucking, hair twirling, or nose picking; older children may begin to lie, bully, or defy authority.

Reducing Stress
How to help? The biggest stress-reducer for children is a good foundation. Proper rest and
good nutrition can help increase your child's coping skills, as can good parenting. Make time for your child each day. Whether she needs to talk or just be in the same room with you, make yourself available. Even as your child gets older, this "quality time" is important. It's really hard for some people to come home after work, get down on the floor and play with their kids or just talk to them about their day - especially if they've had a stressful day themselves. But by showing interest in your child's life, no matter what her age, you're showing her that she's important to you.

Help your child cope with stress by talking with her about what may be causing it. Together, you can come up with a few solutions. Some possibilities are cutting back on after-school activities, spending more time talking with parents or teachers, developing an exercise regimen, or keeping a journal.

You can also help your child by anticipating potentially stressful situations and preparing her for them. For example, let her know ahead of time that she has a doctor appointment, and talk about what will happen there.

Remember that feeling some level of stress is normal; let your child know that it's OK to feel angry, scared, lonely, or anxious. Let her know that other people share her feelings.

Books are a great way to allow young children to identify with characters in stressful situations and learn how they cope. Some titles include Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst; Tear Soup by Pat Schweibert, Chuck DeKlyen, and Taylor Bills; and Dinosaurs Divorce by Marc Brown and Laurene Krasny Brown.

Most parents have the skills necessary to deal with their child's stress. The time to seek professional attention is when any change in behavior persists or when your child's stress is causing serious anxiety. If you are unsuccessful after several attempts to get to the source of your child's troubles, see your child's doctor and talk to the counselors and teachers at your child's school. These sources can lead you to competent professional help.

Updated and reviewed by: Kim Rutherford, MD
Date reviewed: March 2002
Originally reviewed by: Pam Bushnell, LCSW
 
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/