Juvenile-HD
INDEX Page

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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
Key Word Search For HD Information
Is On The HD Support Information Page
Click Here:  Index~HD Search
 
INSTRUCTIONS
Click on a Section to be taken to a brief write up about that section as well as links to the information contained there.  All pages have a "Index" at the top which will bring you back to the Index Page and links to other sections.  Use your back-button to go back to a section.

 
Join A Live Chat
Have family or friends meet you in the HD Live Chat Room on the HD Support
Information webpage, or join others living with HD.  Click : Live Chatroom
 
Tools For Viewing  page has been added for downloading Adobe to read PDF
documents, Shock Wave, a link to the Languarge TranslaterMapQuest for
driving instructions, MSN's Encarta Talking Dictionary, link to InteliHealth's
Medical Dictionary and Tests & Procedures plus links for free webpages and
web tools.
 
Other Resources:
Join JHD Caregiver's on Yahoo click
 
Clinical Definition-Search  look up the definition of medical terminology (mumbo-jumbo) used by your doctors!
 
Brain Book, Brain Parts & Neurons in English or Espanol "The Virtual Body Copyright HCA 2002"
 
"The Brain-How It Functions"
Written for kids in understandable language!
http://kidshealth.org/kid/body/brain_SW_p2.html
 
HD Specific Testing/Tools
 
QUICK HELPERS
In addition to the above, the following items are contained on this site may
assist parents in the on-going care of their child:
SECTION INDEX
On your first visit, please take the time to read the Introduction to each
section. Thank you! 
 
Click on any section title to be taken to a list of information contained in
that section.
 
   Articles discussing age and probability of getting HD
   thought provoking experiences of others at-risk, what
   if a parent hasn't been tested, what's in the best interest
   of your child,an at-risk checklist, Q&A on risk of inheriting HD
 
   Information on genetic disorders, genetic testing in HD,
   counseling, psychological impact of testing, prenatal and
   preimplanation, genetic resources and personal stories.
 
   All available information I have had archived on JHD including
   age of appearance, age of onset, children of parents with HD,
   clinical description of JHD, what kids are saying, duration of
   illness in JHD, symptoms, talking with children about HD, stages
   of HD and other JHD resources.
 
  An extensive list of descriptions of the various symptoms which
  can be associated with Huntington's Disease from anxieties
  through treatments.  Resources include several HD specific
  guidebooks and other available information.
 
   Communication resources, problems and strategies
 
  Extensive listing of resources, facts and suggestions
  regarding nutrition, speech & swallowing guides,
  warning signs, taste changes, weight gain/loss, resources
  for fortified drinks/shakes, and resources on feeding tubes.
 
   Articles discussing the various types of therapy helpful
   for people with Huntington's Disease including behavior,
   physiotherapy, physical and speech plus other resources.
 
   Extensive listing of medications used in the treatment of
   symptoms in HD from anti-depressants to vitamins. Links
   to several excellent resources for looking up stats on
   medications prescribed by your physician to access risks,
   potential problems with other medications, etc.
 
  Articles on the surgeries possible for Movement Disorders,
  descriptions on the procedures used, what to expect.  For
  example, Vagus Nerve Stimulation, baclofen pump, etc. Also
  information on preparing your child for the hospital.
 
  Coverage of all the possible clinical visits one might have to
  go through in the diagnosis and treatment of HD including
  how to prepare for the, CT Scans, MRI's, Swallowing Test,
  and other resources.
 
   Guides for parents on determining if your child/young adult
   has a problem with either alcohol or drugs,  how to discuss
   this issues with children, and other resources.
 
   Straight talk on suicide, teens and suicide and other resources
   to help families and young people recognize and deal with
   this very sensitive and serious problem.
 
   Articles on the stress children might experience in a divorce,
   tips for divorcing parents.
 
  Several excellent resources from guides on disability
  issues, caring for a child with a serious illness, special
  education programs, resources, financial planning for
  a special child, resources, camps for special children
  and a link to many WISH Foundations.
 
  Child assistive technology available to help your child,
  adaptive equipment and links to products.
 
   Signs on what to look for in your child from an
   behavior to an healthy self-esteem plus several
   excellent links to additional resources.
 
   Resources on how to help a child deal with death
 
  Many HD families have a child who has a learning
  disorder or has been diagnosed with behavioral
  problems.  This section discusses ADD and teens,
  conduct disorders, FAQS relating to the various
  disorders, and research articles.
 
   Links to Huntington's Disease support groups,
   information on how to start a support group in
   your area and links to HD chats and on line groups.
 
   Direct links to other resources on Huntington's
   Disease and related information, Tips For Friends
   of someone with HD.
 
  Extensive list from benefits check up, Medicaid,
  Medicare, Prescription Drug card programs (discounted
  drugs), the Sliding Scale (how to get reduced fees if you
  don't have insurance), Social Security and children with
  disabilities and other resources.  Excellent article on
  what the Medical Insurance Bureau has on YOU.
 
  Juvenile HD and ADD - Dr. Martha Nance responds to
  my questions on the relationship between JHD and
  ADD and thoughts on medications.
 
   Articles and resources for those caring for someone
   with HD, self-assessment tests, caregiver's handbook,
   First Shift brochure, Respite, Helpful forms which can
   be printed out, tips and useful tools.
 
   Articles about Jean Miller and her daughter, Kelly E. Miller
   who had Juvenile HD.