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
5 Swallowing Problems

INDEX Page

5 Levels Difficulty In Swallowing
 
This seems to describe different levels which might be beneficial in
the various stages of HD.


Dysphagia Diet 5 Levels Difficulty In Swallowing Diet
including  sample menu's and provides  the names and phone numbers for
manufacturer's for Commercial Thickening Agents
http://www.gicare.com/pated/edtgs07.htm

Level 1 - Puréed Foods
Foods in this group are puréed to a smooth, mashed potato-like consistency. If necessary, the puréed foods can keep their shape with the addition of a thickening agent. Meat is puréed to a smooth pasty consistency. Hot broth or hot gravy may be added to the puréed meat, approximately 1 oz of liquid per 3 oz serving of meat.

CAUTION: If any food does not purée into a smooth consistency, it may make eating or swallowing more difficult. For example, zucchini seeds sometimes do not blend well.

Level 2 - Minced Foods
Foods in this group should be minced/chopped into very small pieces (1/8 inch). The flecks of food are similar in size to sesame seeds.

Level 3 - Ground Foods
Foods in this group should be ground/diced into 1/4-inch pieces. These pieces of food are similar in size to rice.

Level 4 - Chopped Foods
Foods in this group should be chopped into 1/2-inch pieces. These pieces of food are similar in size to uncooked elbow macaroni or croutons (small bread cubes).

Level 5 - Modified Regular Foods
Foods in this group are soft, moist, regularly textured foods
 
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Explanation of some Swallowing Programs

Self-Feeding and Swallowing Treatment Programs
When your feeding and swallowing difficulties require therapy, your speech- language pathologist and occupational therapist will work together to design and implement a program specific to your needs. Our goal is to help you reach your highest potential for safe swallowing.

Several treatment approaches which may be included in your swallowing program are:

Oral Motor Methods - These may include an exercise program for your chewing and swallowing muscles, as well as training specific swallowing techniques.

Therapeutic Feeding - Small amounts of food are given to increase the patient's ability to eventually tolerate a complete meal safely.

Posture - Recommendations are made to assure that your head and body is positioned for safe and efficient swallowing.

Adaptive Equipment - Equipment may be recommended to help you with positioning and feeding yourself. Some devices that may be recommended include arm and lapboards, wheelchair cushions and adaptive cups and plates.

Changes in Eating Style - Changes may be recommended by your swallowing therapists to assure safer swallowing. A written list of recommendations will be provided and may include suggestions such as eating more slowly, swallowing more frequently, eating in a quiet area with few distractions, eating only certain food consistencies, etc. The
reason for each recommendation will be explained to you by your swallowing therapists.

Food Preparation - Foods may be prepared in different ways to help you swallow safely. Your foods may be pureed, blenderized or soft as ordered by your physician. Liquids also have different consistencies. Thicker liquids may be easier at first to swallow than thinner liquids.

The following list gives examples of diet orders including foods you
may receive at meals.

Physician's Diet Order - Foods may include:

Thick Liquids - Cream soups, hot cereal, custard, puddings, thick frappe, and apricot nectar.

Thin Liquids with Thickener - A powdered additive (cornstarch) may be used to thicken consistencies of thin liquids.

Thin Liquids - Water, soda, fruit juices, hot beverages, milk, jello, melted ice cream.

Puree Diet - Meat, vegetables, fruit will be pureed; mashed potato, whipped squash, applesauce, cream of wheat and oatmeal.

Basic Soft Diet - All meats will be ground and vegetables will be blenderized. Soft chewables are allowed including canned fruits, scrambled eggs, hot cereal, rolls, muffins, bread, pastas, casseroles, stews, quiche, pie, pancakes.

Advanced Soft Diet - Soft cut meats and cooked vegetables, and canned fruit are allowed. All foods allowed for basic soft diet are also available on advanced soft diet .

Dental Soft Diet - For patients who may have difficulty chewing. This diet restricts fresh fruit, raw vegetables and foods containing nuts. Most other foods are included. (Some patients require foods from more than one of the above categories.)

House/Regular Diet - Foods have no modifications of ingredients or textures

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Nutrition and Huntington's Disease, A Practical Guide.
http://www.huntington-assoc.com/form.html to order


Ellen van Broekhoven (dietician), Dirk Gaasbeek (nursing home physician),
and Maartje Veninga (speech therapist) work in a nursing home with a special unit for patiens suffering from Huntington's Disease. They discovered that there were no ready answers to questions in relation to, in particular, nutrition for patiens suffering from this disease.

It is for this reason that they decided to pool their knowledge and experience into a very practical guide and to supplement it with information from the skimpy scientific literature on this subject.

The book provides insight into the nutritional problems that exist among patients suffering from this disease from the point of view of various disciplines. With that, it appears time and again that communication, i.e. to understand what the patient wants and to which degree it is possible to discuss problems of vital importance. That is why communication comes up extensively. Another question that is raised is whether or not tube feeding may be a good alternative if regular feeding is no longer possible.

What makes this book so unique is that it serves as a comprehensive guide for medical practitioners and paramedics.

In this recommendation, Prof. Dr. H.P.H Kremer, neurologist, says: "I warmly recommend this book to those who, either in their work or in the family, have to deal with patients suffering from Huntington's Disease. This is the first practical publication in this field and I hope it will inform and inspire many people."
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toll-free HELPLINE  1-800-638-8255

Free Consumer Brochures Examine Swallowing Disorders in Children and Adults
http://www.asha.org/press/swallowing_brochure.cfm

(ROCKVILLE, MD-May 1, 2001) Two new brochures focusing on swallowing
disorders are available free of charge to consumers from the American
Speech-Language-Hearing Association (ASHA).

"Feeding and Swallowing Problems in Children" and "Swallowing Problems
in Adults" discuss some of the causes and symptoms of swallowing disorders, or dysphagia, as well as how swallowing problems can lead to poor nutrition, dehydration, or pneumonia in both children and adults.
 
The brochures also examine the different phases at which problems can occur in the swallowing process, from difficulty chewing or moving food or liquid from the mouth to the throat, to problems in squeezing food through the esophagus.
 
In addition, the brochures address the role of the speech-language pathologist in evaluating and treating dysphagia.

Consumers can receive the brochures by calling ASHA's toll-free HELPLINE
at 1-800-638-8255. Consumers may also view the brochures online, as well as obtain referrals to qualified speech-language pathologists and access additional  information on speech, language and hearing development and disorders, by visiting the ASHA website at
www.asha.org

ASHA is the national professional, scientific, and credentialing association for more than 99,000 audiologists, speech-language pathologists, and speech, language, and hearing scientists.

Resources in Spanish
¿Qué es una evaluación audiológica?
http://www.asha.org/hearing/testing/espanol_aud.cfm

Problemas de la voz http://www.asha.org/speech/disabilities/espanol_voz.cfm

Related Links:

Augmentative Communication: A Glossary
http://www.asha.org/speech/disabilities/acc_primer.cfm

Introduction to Augmentative and Alternative Communication
http://www.asha.org/speech/disabilities/disabilities.cfm

Augmentative and Alternative Communication Decisions
http://www.asha.org/speech/disabilities/Augmentative-and-Alternative-Communication-Decisions.cfm