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
Talking With Children About HD

INDEX Page

Free Brochures
I received the following message April 29, 2002 I'd like to share. You may want
to talk to your parents, chapters, etc about getting these booklets. 
                                            ~~~~~~
I am a child psychologist and also have Huntington's Disease in my family. I have
developed two booklets that help young people deal with their feelings about HD.
These booklets are designed for two age groups (5-10 and 11-18).

They are designed to be used with an adult or in a support group with an adult
leader. They are free to anyone who sends me their snail mail address.
My e-mail is
HDlighthousekids@aol.com

Jeanne
=====================================================
 
TALKING WITH CHILDREN ABOUT
HUNTINGTON DISEASE IN THE FAMILY
by Arlette Lefebvre, MD, O.On, CM
 
As a child psychiatrist, I have been working with disabilities and/or
chronic illness for the past 25 years. My clinical research has focused
on developing health education tools and strategies to overcome
stigma. On a personal level, I grew up with a brother with Down
syndrome, and recently watched my father slowly lose his brilliant
mind to Alzheimer's. Perhaps this is why I am particular aware of the
complexities involved in telling children about Huntington's in the family.
 
GENERAL PRINCIPLES FOR HELPING CHILDREN UNDERSTAND
A PARENT'S CHRONIC ILLNESS:
 
1. Truth is better than deceit, and honesty fosters trust and a sense
of security. In other words, never evade your child's questions and
never lie when you answer. However.......
 
2. Before jumping in to answer a question, always take time to clarify
what the question was really about. The question, "Is Daddy OK??",
coming from a young child whose father with HD tripped and fell down
the stairs, probably just meant, "Is Daddy hurting? Does he need help?"
 
3. There may not be a need to introduce "the whole truth". It is often
more humane and effective to share the truth in "installments", or
easier-to-swallow bites. For instance, when asked "Can doctors make
Mommy better?", it's perfectly OK to make a distinction between
symptom relief and cure.
 
Many children of parents with HD will have experienced Chicken Pox by
the time a parent starts exhibiting HD signs and symptoms, so you could
tell them that the medications is helping Mom control her movements, the
same way that "the pink Calamine lotion controlled your itchiness when
you had Chicken Pox"; but you can then add that neither medication can
prevent or "cure" the illness.
 
4. Be aware of your child's developmental level and how this affects his/her
reasoning and understanding before launching into a complex explanation
about the illness and its causation. Abstract thinking does not develop until
adolescence; before then, abstract discussions about genetics will only go
over a child's head and confuse them.

TELLING A PRESCHOOLER:

  • Use language your child knows.
  • Keep explanations very short.
  • Use dolls and puppets to illustrate the hospital visit.
  • Forewarn the child of anticipated changes in the affected
    parent's role.   For instance, "Daddy has a serious sickness,
    that's why he's been jumpy and dropping things lately. The
    doctors are trying to help him with this sickness, but he
    won't be strong enough to play ball with you for a while."

TELLING A SCHOOL-AGED CHILD: 

  • Give the child the name of the disease. Write it down.
  • Emphasize that nothing the child did caused this disease.
  • Point out that you can't "catch it" by hugging or sharing
    a snack with the person who has it.
  • Outline a plan for making sure the child's needs
    are met, and their daily routine is kept as normal
    as possible. This may involve enlisting the help
    of relatives or neighbours in filling in for parental
    responsibilities which the affected parent can no
    longer handle.
  • Give the child an overview of what doctors are
    doing to help control the symptoms of the disease.
  • Give examples of what the child can do to help the
    affected parent feel loved (draw a picture, tell
    Daddy you love him, etc.)
  • Make sure your child knows that his/her parent's
    irritability or mood swings are not their fault.

TELLING A TEENAGER:

  • Give as much detailed information as possible.
  • Be prepared for any reaction, including anger - all are normal.
  • Answer every question, including ones about
    transmission, as fully and honestly as possible.
  • Give the teen options for doing further research on
    her own (for instance, Internet resources), pointing
    out recommended and reliable resources.
  • Be flexible as far as daily chores and routines;
    don't expect your teenager to volunteer to take
    on extra duties or hospital/doctor visits to
    alleviate your own load.
  • Make sure the adolescent has someone to talk to from outside
    the family, preferably someone they trust and who will keep
    their conversations confidential.
SPECIFIC CONSIDERATIONS IN TALKING TO
CHILDREN AND ADOLESCENTS ABOUT HD:


1. As the illness progresses, symptoms will become more noticeable
and elicit social reactions to visible features of the disease. The most
important principle here is, no matter how painful it is for the adults
in the family to acknowledge that such public reaction might exist,
to never deny the possibility that kids observed a social reaction you
missed. Rather than deny the stigma associated with Huntington's,
have a frank discussion about how people tend to fear any "different
behavior" which they do not understand. Make a plan about who
you'll share the diagnosis with and who you might not; enlisting the
support of teachers and special coaches is probably a good idea,
telling the stranger on the street is not.
 
2. As mood swings become more accentuated, and the affected family
member's insight decreases, children may feel nothing they do is ever
right or enough to please. Be alert to signs of discouragement or
symptoms of anxiety (including stomach and headaches) and be prepared
to tackle the topic of personality changes associated with HD.
 
3. Individuals with HD tend to overestimate their capacities, physical
as well as mental. As difficult as it may be to tell them they are no
longer able to parent alone, building in alternatives is less painful than
dealing with the aftermath of well-intended, but erratic, parenting.
 
4. Never ask an older child to act as chaperone for a parent with HD;
the burden or responsibility and split loyalties are just too much for
any child or teenager to bear.
 
5. Waiting until age 18 to find out whether or not you inherited
Huntington's can be a tremendous stress and constant worry
for your children. If they ask, it's important to answer truthfully
about this possibility and give them the opportunity to discuss
their fears and nightmares with a trained counselor or therapist.
Even if children are functioning well at school, chances are they
are bottling up a lot of these fears and anxieties, afraid of adding
to your burden and sadness if they share them.

Source: Horizon, newsletter of the Huntington Society of Canada ,
winter 1999) 
http://www.huntington-assoc.com/children.html

The Best  Way to Discuss HD with Young Children

From the HDSA "Information" http://www.hdsa.org
 
Q:     What is the best way to discuss Huntington's Disease with
          young children if a parent has HD  or is at risk?
A:
We begin educating our children at birth by transmitting attitudes 
on all topics in subtle ways. There are some basic principles to
guide parents when discussing difficult topics with their children.
 
HONESTY: It is extremely important to be open and honest.
Children know when parent is not telling the truth or is anxious
and will then become suspicious and probably stop listening.
 
AGE APPROPRIATE: The information presented should be age
appropriate in language and in concepts the child can understand.
 
SMALL DOSES: We learn progressively and information is best
absorbed in small increments over time. When we listen carefully,
children let us know when they've heard enough and will return
for more at a later time.
 
COMFORT: Do all that is necessary to talk in calm and comfortable
manner. Perhaps discuss your plan with an HD health care
professional, family member or friend first. Many find it is helpful to
role-play such situations prior to meeting with the child. Support
groups are excellent places for such practice.
 
Sharing information about HD and how it affects individuals may
be the most difficult topic for the HD family. It seems advisable to
discuss less difficult topics first. Children need to know and
understand the whole history of their family in order to have a
sense of pride and belonging. Perhaps begin by discussing the
family's geographical history then move on to the positive physical
and behavioral characteristics. Also, many families use certain
names in every generation so preparing a family tree would be
 helpful and could be used again in later discussions.
 
Some attitudes and beliefs important to transmit to children about HD are:
  • Acceptance and respect for members of the family with HD.
  • Optimism and hope. Extensive research is in progress
    and a treatment and hopefully a cure will be found.
  • No one is at fault for HD; it is not a punishment.
  • You never know who in the family will develop HD.
  • Admit that HD is confusing and difficult to understand.
  • Parents have no control over the transmission of the
    gene and certainly never intended for it to occur.
I recently asked two questions of the HD support group at the
HDSA Center of Excellence at Emory University:
 
1.  Should children be told about HD?
     The answer was a unanimous YES. When discussion is avoided,
     parents convey that HD is something about which there should
     be embarrassment and shame. The group felt that difficulties
     arise when this important information is withheld. Children need
     to hear about HD from their parent and not by accident or
     from someone else.

 
2.  At what age should children be told?
     There was agreement that children as young as three or four
     can begin hearing about HD and that by age eight are ready
     for full, open discussion. Other helpful resources to consult on this
     topic include The Cartoon Guide to Genetics by Larry Gonick and
     Mark Wheelis, New York: Harper Perennial, 1991, and Walking
     the Tightrope, Randi Jones, Ph.D., New York, HDSA, 1996.
 
Taylor Butler, LCSW, is a social worker at the HDSA Center of Excellence,
Emory University, Atlanta, GA.