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
JHD Resources

INDEX Page

Juvenile HD Handbook~A Guide for Physicians,
Neurologists and Other Professionals
By Martha Nance, MD, 2001, 67 pages
 
This guide is available from HDSA's website or you can call 1-800-345-4372
and ask for Anita Mark-Paul Extension 19 or send her an email:
 
Written and Edited by Dr. Martha Nance, the top notch expert on Juvenile
HD in the US, with input from Randi Jones, Ph.D., Suzanne Imbriglio, P.T.
and Betsy Gettig, M.S. C.G.C. this is one of the most extensive books
providing current information on Juvenile Huntington's Disease and every
family should have one as well as make sure your child's neurologist and
family doctor have one.
 
This book provides readers with information about Juvenile HD, including
genetic testing, when it is appropriate to perform the test, how to understand
your HD affected child, and what to do if you find yourself in compromising
situations as well as where to turn for help.
Chapters cover:
  • The Diagnosis of HD in A Child
  • After The Diagnosis
  • Specific Medical Issues
  • Daily Life
  • The Late Stages
  • Financial/Legal/and Social Services Issues
  • Caring For the Caregiver and
  • Hope For The Future.
The cost is $6.00 and worth every penny! https://www.nyic.com/hdsa/edu/edu.pl?orderform
 
 
Juvenile Huntington Disease:
A Resource for Families,
Health Professionals and Caregivers
 
Available in PDF format from the Huntington Society of Canada where
you can print it out or a hardcopy can be ordered from the HDS.
 
This guide covers:
  • About JHD
  • Living With JHD (schooling, physical therapies,
    swallowing, behaviour, seizures and drug
    treatments) and
  • Late Stages of the disease.  

This booklet is different from the one offered through the HDSA, above.

------------------------------------------------------------------------------------------

From the HDSA website www.hdsa.org

Ask The Doctor

The following column features expert responses to commonly
asked questions about HD care and treatment.
 
How can an HDSA Social worker help my family deal with Juvenile HD?
Kathy Knoblauch, MSW, is a social worker for the Massachusetts Chapter.
 
During the course of Juvenile HD, families are under incredible stress.
For parents, maintaining employment may become challenging, caregiving
may create feelings of isolation or helplessness, and feelings of guilt or
rage may become overwhelming.
 
For the siblings of the child with HD, fear of the disease or the sibling may
set in, attention-seeking problem behaviors may arise, and survivors guilt
may lead to emotional problems. Under no circumstance should a family
try to carry these burdens alone.
 
HDSA social workers can offer help to the whole family as they try to sort
out the complex emotions and challenges that they face. Social workers
roles vary, but in general, we provide emotional support as well as case
management services. Often, we are qualified to provide individual and/or
family counseling that may be very helpful in dealing with the difficult
dynamics that arise due to the stress of having HD in the family.
 
Social workers are very knowledgeable about community resources, including
home care, respite care, housing options, transportation, and legal and
financial assistance. We are familiar with the eligibility criteria, and can help
families get through the maze of services and red tape. We know how the
system works, and serve as advocates for the family.
 
Resources for Children
 
There are many resources available for children struggling with HD.   People
with juvenile HD often qualify for resources under Developmental Disabilities
programs. It is a good idea to explore this resource as soon as possible,
because there may be a whole array of well-funded services, including respite
care, available. In many cases, the services extend into adulthood if the
person is eligible.
 
Some of the most helpful resources for children or teens in the early stages of
HD are found in the school system. Through the school system, your child may
have access to classes to assist with diminishing cognitive abilities.
 
Physical and occupational therapy is also available to help students develop
to the fullest extent possible.
 
It is important for parents to familiarize themselves with community resources
that may be helpful as their childs HD progresses. These resources may include
home health care (through a visiting nurse association or a private home care
organization), respite care (in-home or out-of-home), and care in a long-term
care facility (such as a nursing home or chronic care hospital). Contact a social
worker for more information about resources in your area.
 
Because the financial burden of care can be quite overwhelming, it is very
important to plan ahead to finance care in the later stages. This may include
applying for Medicaid, as well as exploring other health and life insurance options.
It may be helpful to consult with a social worker and/or lawyer familiar with
financial planning for people with illness or disability.