Juvenile-HD

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SECTION 1 - AT RISK
Age & Probability Chart
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Crystal Ball?
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SECTION 2 - GENETIC TESTING
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o Genetic Testing Resources
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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
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HD - What Kids Are Saying
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Talking With Children About HD
5 Stages of HD
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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
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Bradykinesia
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Chorea
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Dehydration
Delirium
Denial of HD
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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
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-Seizures ~Special Populations
Falling~Safety
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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
Child Long Term Illness

INDEX Page

 
THE CHILD WITH A LONG-TERM ILLNESS
 

The child with a serious medical illness is at risk for developing associated emotional problems. Unlike a child with a temporary sickness such as the flu, the child with a chronic illness must cope with knowing that the disease is here to stay and may even get worse. Child and adolescent psychiatrists point out that almost all of these children initially refuse to believe they are ill, and later feel guilt and anger.

The young child, unable to understand why the sickness has occurred, may assume it is a punishment for being "bad." He or she may become angry with parents and doctors for not being able to cure the illness. The youngster may react strongly against pampering, teasing, or other attention. Uncomfortable treatments, and restrictions in diet and activity may make the child bitter and withdrawn. To help your child deal with the disease you need to give them honest, accurate, and age appropriate information to help them understand.

A teenager with a long-term illness may feel pulled in opposite directions. On the one hand, he or she must take care of the physical problem, requiring dependence on parents and doctors. On the other hand, the adolescent wants to become independent and join his or her friends in various activities. When a teenager with a long-term illness tries to decrease or stop taking the prescribed medication without consulting with the physician, this often shows a normal adolescent desire to take charge of one's own body.

Chronic illness may cause school problems, including avoidance of school. This can increase the child's loneliness and feeling of being different from other youngsters. It is important for parents to help a child maintain as normal a routine as possible. They should respond not only to the child's illness, but to the childs strengths. Child and adolescent psychiatrists know that if isolated or overprotected, the child may not learn to socialize or may have difficulty separating from parents when it is time to be involved in school or other activities outside the home. It is often helpful for the child to be in contact with others who have successfully adjusted to living with a chronic illness.

In their prolonged periods of hospitalization and/or rest at home, children may develop excellence in a hobby or a special talent such as art, model airplanes, or a foreign language. They may also try to learn as much about their illness as possible. Such activities are emotionally healthy and should be encouraged.

Children with long-term illnesses are often treated by a team of medical special-ists. This team often includes a child and adolescent psychiatrist, who can help the child and family develop emotionally healthy ways of living with the disease and its effects. For additional information see Facts for Families: Children and Grief (#8), Children Who Wont Go to School (#7), Children and AIDS (#30).

 

Article #19 Updated 5/99

All Family Resources wishes to thank the (AACAP) for giving us permission to use this article.

The American Academy of Child and Adolescent Psychiatry (AACAP) represents over 6,900 child and adolescent psychiatrists who are physicians with at least five years of additional training beyond medical school in general (adult) and child and adolescent psychiatry.

Facts for Families (copyrighted) is developed and distributed by the American Academy of Child and Adolescent Psychiatry (AACAP). Facts sheets may be reproduced for personal or educational use without written permission, but cannot be included in material presented for sale. To order full sets of FFF, contact Public Information, 1.800.333.7636.  Free distribution of individual Facts sheets is a public service of the AACAP Special Friends of Children Fund. Please make a tax deductible contribution to the AACAP Special Friends of Children Fund and support this important public outreach. (AACAP, Special Friends of Children Fund, P.O. Box 96106, Washington, D.C. 20090).