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Juvenile-HD

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INDEX Page
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10 The Most Commonly Asked Questions
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Huntington's Disease~WeMove Info
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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
Helping Child Deal With Death

INDEX Page

When Jennifer T.'s grandfather died unexpectedly, the 4-year-old bombarded her grief-stricken parents with questions: "What did they put Poppa into to bury him? Is he lying down or standing up in the ground? What's he wearing?" Jennifer's mother had expected questions,  but she was surprised by the child's need for literal explanations.

"I was shocked. I wasn't thinking along those lines. I was thinking totally emotional, spiritual, and she's getting into coffins and dirt," Jennifer's mother says. It's not that Jennifer wasn't going to miss Poppa. It's just that children deal with everything - even death - in concrete and simple terms.

Here are some tips for helping kids cope with death - and at the same time teaching them to cherish life.

Get a Handle on Your Own Feelings
Most parents wait until confronted with death to start thinking about how to help their children with the concept. That may not be the best time, especially if the parents are also dealing with a loss.

Better to take a few moments now and reflect on your beliefs about death and your own experiences with it. "Then you can explain to your kids what you felt when your pet cat Fluffy died or when your grandpa died. That will give them the feeling that death and loss are universal, which of course they are," says M. Nan Jobson, LCSW, a social worker in Jacksonville, Florida.

Teach Your Child About the Circle of Life
There are endless opportunities to talk about death as a part of life, but most parents ignore these chances, trying to protect children from unpleasantness. Experts say seize these opportunities instead. The dying blooms on the rose bush in the garden can teach a lesson about life and death, as can the Working with Grandpa changing seasons or the death of a family pet. Visit elderly relatives or friends and show children that aging, although not always pleasant, is natural. If children are given the message that dying is OK to talk about, they will feel free to ask questions and will cope better when confronted with the death of a loved one. Colleen Mayo Friedman, MSW, LCSW, a family bereavement specialist, says, "Kids face death naturally if the adults around them allow it."

Include Your Child in Your Own Grief
Someone close - a grandparent, a close friend, maybe even your spouse - has died. The parental instinct is to shield children from the pain you are feeling. Don't, or your child will be forced to deal with it later. Twenty-nine-year-old Jodie R. lost her father when she was 5. "No one in my family talked to me about his death. They just said, 'He went away,' and, of course, I wanted to know, 'When's he coming back?' I'm still asking that question today, and it continues to affect my life." Jodie wishes her family had let her in on the grieving. "I know they were trying to protect me. It didn't work in the long run," she says.

It's not easy to let your child see you grieve, but hiding it from him or shuttling him off to Aunt Susie's will not only make him feel cut off from you but will send the message that it's not OK to cry or feel sad when someone dies. That is exactly the opposite of what your child needs to know. "What you want to do is give the child hope that the pain passes," says Jobson. "Your job is to let them know pain is part of living and that it does go away."

Be Honest
Children's questions about death are often hard to answer. The best you can do is be direct and honest at all times, and only give as much information as your child asks for. If, like Jennifer, it's coffins and dirt he wants to know about, talk about that. If he wants to know if he is going to die, your answer can be a totally honest, yet subtle, "That will be a long, long time from now."

One of the biggest concerns children have is their own security. They want to know if Mommy and Daddy will always be there. Let your child know Mommy and Daddy will be around a long time too, but if anything did happen, he would always be cared for.

Avoid cliches such as "Grandma's gone away" or "Grandpa went to sleep." These will raise more questions and cause more fear than a simple "Grandpa has died." And don't forget, if your child stumps you, you can always say, "I really don't know the answer to that."

Be Spiritual
Religion teaches about the meaning of life and death, provides explanations, and offers comfort. If you are not religious, you can still teach your children there is a higher meaning of life. We can carry on the good works of a loved one who died. We can dedicate some good works of our own to their memory. Parents can teach children that there is a reason for everything, even death. Seeing themselves as a small but important part of a larger mosaic can help children remain hopeful. "
Spirituality helps in the sense that this is the way things are supposed to be, and it gives us hope that it's not over when it's over," says Rabbi Gary Perras.

Keep the Memories Alive
Rather than ban talk about the loved one who died, or avoid mentioning fun times together, go out of your way to keep the memories alive. Make a special photo album of the child with Grandpa, and look through it often; go out to eat at Grandma's favorite restaurant, and try to figure out what she would have ordered. Jennifer T. may have been only 4 when her "Poppa" died, but now at age 8, she thinks of him whenever she enjoys his favorite candy. "He liked butterscotch, and so do I," she says with a smile.

"As long as we talk about that person, laugh or even cry about that person, that person lives on for us. Instead of just telling kids that, we should show them by doing it," Jobson adds.

More Information
The death of a family pet is often the first experience a child has with dying. Make it a valuable and positive lesson. Say goodbye to the pet, if at all possible. Go through the rituals of death with your child. Bury the pet. Say prayers for it, if appropriate for your family. Discuss death and your particular beliefs about it. Grieve together. Make an album of favorite photos of the animal. Talk about the pet often and with love. These small steps will give your child a strong foundation that will help him when faced with the loss of a person he loves.

Should children be taken to funerals? In general, experts say yes. It is far better, even for an infant, to be with his family during a time of grief, than kept away. And if the deceased is a parent, then by all means a child should be included in all mourning rituals. Take time to prepare a child for what will happen at the funeral. ("Aunt Jane is going to cry a lot, and I just want to make sure you know that so it won't scare you.") If you think your own grief might prevent you from helping your child at this difficult time, appoint another relative or friend to stand in. If your child is reluctant to attend the funeral, don't force the issue. Discuss it, address the child's concerns, but don't push.

Updated and reviewed by: Kim Rutherford, MD
Date reviewed: May 2001
Originally reviewed by:
Steven Bachrach, MD

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/