Juvenile-HD

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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
HD Principle Treatments

INDEX Page

HD~Principles of Treatment
 
 
Everyone living with HD should "refresh" themselves on the principles of treatment for HD periodically.

Every physician with an HD patient should have a copy of this book too which is free to physicians  requesting one from the HDSA 1-800--345-4372 or the online version can be found at HDL http://hdlighthouse.org/see/pg2/0.htm

  • The medication list and the rationale for each medication needs to be reevaluated at regular intervals.
  • Sometimes the most helpful intervention a physician can perform is to discontinue an unnecessary drug.
  • HD patients are highly vulnerable to side effects, particularly cognitive side effects, of medications.
  • The physician should begin with low doses and advance medicines slowly.
  • Pharmacologic interventions should not be launched in isolation, but in a setting of education, social support, and environmental management.
  • Patients should understand that there is no substance, no matter how "natural," which has pharmacologic activity without side effects, and that all treatments carry an element of risk.


    ==================

A Physicians Guide to the Management of Huntington's Disease
Second Edition

Principles of Treatment

Caring for patients with HD is both challenging and rewarding. At times, the lack of definitive treatments can be frustrating, but careful attention to the changing symptoms and good communication between professionals,
family members, and affected individuals all contribute to the successful management of the disease.

HD is a progressive disease. The symptoms evolve over time such that treatments which were effective in the early stages may be unnecessary, or problematic later on, and vice versa.

For example, medications such as neuroleptics may be started in the early to middle stages to control chorea. However, this category of medications may exacerbate the rigidity and bradykinesia of the later stages, and result in delirium or oversedation as the cognitive disorder progresses.

The medication list and the rationale for each medication needs to be reevaluated at regular intervals.

Sometimes the most helpful intervention a physician can perform is to discontinue an unnecessary drug.

Symptoms vary over time as a patient passes through different stages of the disease. Symptoms also vary fromindividual to individual, even within a family. For example, one patient may develop a severe mood disorder,
requiring multiple hospitalizations, but have little motor disability. The patient's brother may have debilitating motor symptoms, but no mood disturbance at all. Thus interventions need to be tailored to individual symptoms,and fearful patients should be reassured that their symptoms may not necessarily resemble those of their relatives.

HD patients, like others with injuries to the brain, are highly vulnerable to side effects, particularly cognitive side effects, of medications. The physician should begin with low doses and advance medicines slowly.

Polypharmacy should be avoided where possible. Many of the drugs used in treating symptoms of HD, such as neuroleptics and antidepressants, will not have immediate efficacy and patients need to be told that they may feel worse before they feel better, because they will experience the side effects, before the beneficial effects have appeared.

"HD patients... are highly vulnerable to side effects, particularly cognitive side effects, of medications."

Pharmacologic interventions should not be launched in isolation, but in a setting of education, social support, and environmental management. Symptomatic treatment of HD needs to be approached like any other medical problem.

The clinician should elicit the details of the symptom, its character, onset and duration, and its context including precipitating, exacerbating and ameliorating factors.

A differential diagnosis should be generated, non-pharmacologic interventions should be considered, and the clinician should have a way ot determining whether the goals or treatment are being met and should formulate a contingency plan if treatment is not working. Sharing some of this reasoning process with patients and famlies can be reassuring.

A few words should be said on the issue of "alternative treatments" for Huntington's disease -unproven remedies such as herbs, megadose vitamins, homeopathic preparations, or magnetic devices, which are to be distinguished from experimental treatments taking place as part of a scientific study.

Patients should be encouraged to discuss their ideas about these therapies and not to be afraid to tell their physicians that they are trying them. This will allow the doctor to help the patient think through the pros and cons of such a decision, to avoid notoriously dangerous or ineffective nostrums, and to monitor for side effects.

Patients should understand that there is no substance, no matter how "natural," which has pharmacologic activity without side effects, and that all treatments carry an element of risk.

We have found it useful to share certain caveats with patients to minimize the risk for those who have chosen to pursue these alternative therapies:

1) Don't spend too much money

2) Don't do something that common sense suggests is dangerous and

3) Don't neglect or discontinue effective medical treatments in favor of an unproven therapy.

By following these principles patients are likely to avoid harm.

_______________________________________________________________

I read this on a PD news update and know they probably apply to HD too, so it might help us to know what the desired outcome is in research/clinical trials etc, ie WHICH type of treatment for HD is being considered!

Symptomatic Therapy
Treatments that improve symptoms

Neuroprotective Therapy
Those that slow the progression of disease are neuroprotective because
they protect or slow the loss of cells.

Restorative Therapy
Those that increase cells or cell function