Juvenile-HD
Crystal Ball?

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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

INDEX Page

 
If You Had A Crystal Ball
 
If you had a crystal ball, would you look into it to see your health future?  At UC Davis Medical Center there is one program doing some real life predicting and it involves complex a genetic disease.
 
The mighty brain, we use it in so many different ways.  It controls motor functioning, how we move and groove our muscles.  The brain is also a thinker.
It processes our emotions, allowing us to laugh or cry, yell or cheer.  But there
is a neurological brain disease that can severely impact how the brain functions.
 
Barbara Briscoe:
"I think for most people if you describe it, and for people who get a new diagnosis
in the family and they go look I up in a medical book, they are horrified, horrified to
read the description of Huntingtons."
 
Huntington's Disease is a progressive disorder that can set in anywhere from about age 20 to 70.  It's a genetic condition that impacts the brain's ability to control  movement, and the first sign of the disease is often fidgeting, muscle twitching or  restlessness.  The disease also impacts the brains ability to control thinking and emotion.
 
Dr. Wheelock:
"Huntington's Disease is a disease that runs in families and it has a pattern in families  called autosomal dominance so that if a person who has it has children each of there  children has a 50% chance of inheriting that abnormal gene.
 
Dr. Vicki Wheelcock is a neurologist who specializes in Huntington's Disease at UC Davis Medical Center.  She is combining innovative research with a progressive team approach to find answers about Huntington's.  She is involved in a study where patients that may have the gene, but don't want to know if they do, are studied for 3 years.  The hope is to find out about the very first symptoms of Huntington's  Disease.
 
Dr. Wheelock :
"We can have some information about people who may develop that disease during that  observation period that will enable us to better design trials of medication that may delay  or ameliorate the effects of having the effects of having the abnormal gene."
 
For people who want to know their Huntington gene status comes in many forms.  There  is a predictive testing program that offers a blood test to determine if you have the gene. Making the decision to find out or not can be a difficult thing.  Huntington's Disease runs in families, but in the past lack of information about the disease kept it a mysterious dark family secret.  Dr. Wheelcock and other specialists are trying to help people understand and deal with this condition.
 
Barbara Briscoe:
"For some it's pretty clear and straight forward-they are concerned about their children  and their grandchildren having children-not necessarily because they don't think they  should-but they feel like they should have an opportunity to know what their risks are."
 
Barbara Briscoe is a Genetics Counselor at UC Davis Medical Center, she walks people through a genetic lesson and couseling to assist them in making the decision about genetic testing.
 
Barbara Briscoe:
"I think the information is there, and I think it can be extremely helpful for people. Some  people live their entire lives feeling like the time they dropped a glass or foot shaking is  the onset of their disease and for them it can allow them to live a life free of that ambiguity  which is, I think, emotionally difficult to live with."
 
Sally Klien:
"People are pretty anxious, number one they're anxious to get through the process of testing  and find out the results for themselves and for their family members. Number two they're  anxious just coming to the UC Davis Medical Center to this huge area and going through this  process with individuals they don't know."
 
Sally Klien, a Clinical Nurse Specialist, is also part of the team helping those at risk for Huntington's.  Her job is to deal with the psychological aspects of the condition.  She is concerned about how Huntington's may be affecting the patient mentally and emotionally and why the patients wants to know if he or she has the gene.
 
Sally Klien:
"When we talk to the individual we go through the what ifs- what if you should test positive what would you do-what if you should test negative what would you do? Because we are concerned."
 
Genetic counseling, a psychological assessment and predictive testing are all a part of this program.  It is a unique approach and the only one in Northern California.
 
Dr. Wheelock:
"We actually specialize in the care of people with Huntington's disease and providing information to them and their families about the disease; treating the symptoms as best as we can; involving them in our research studies; letting them know about the support group; the predictive testing program that we have we let families know about it."
 
There is no cure for Huntington's Disease, but Dr. Wheelcock hopes the study she's involved with can offer an answer to this complex condition.  The goal of the Huntington Program is to offer that crystal ball - give patients information if they want it - and help them deal with what the tests reveal.

Many patients avoid genetic testing in fear of losing their coverage.  But UC Davis Medical Center keeps strict confidentiality about Huntington cases.  It believes that the results are important for the patients future, and that information is best kept between the patient, his or her family, and the medical center.

Source:

HDSA Center of Excellence
The University of California Davis Medical Center
4860 Y Street Suite, 3700
Sacramento, CA, 95817

Huntington's Disease - To  download this article in PDF format (34K) go to http://pulse.ucdavis.edu/scripts/archive/huntingtons_disease.html

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