Juvenile-HD

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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
Dyslexia

INDEX Page

The highly verbal 5-year-old who can't master the alphabet.
The bright, creative 7-year-old who's behind in his reading skills.
The talented teenager whose mediocre grades are blamed on lack of motivation.
The college student who scraped by in high school and now feels overwhelmed.

What these otherwise bright, sociable young people have in common is a disability that makes learning in the "usual" way difficult. Dyslexia, characterized by problems with learning to read, remembering what was read, spelling, and organizing thoughts, may be noticed as early as kindergarten or may never be diagnosed. Because it interferes with the ability to learn in school, dyslexia can be frustrating for both students and parents.

"Trouble With Words"
A common assumption about dyslexia is that it is characterized by reading words in reversed order, i.e., "was" looks like "saw." Although this type of problem can be associated with dyslexia, the disorder cannot be explained simply as seeing letters or words backwards. Dyslexia is marked by difficulties making the basic connection between symbols (letters) and their sounds.

When most children learn to read, they use typical "decoding" skills: recognizing letters on sight and learning the sound each letter makes. Then they begin to figure out (decode) what the letters will look and sound like when they are put together to form words. For people with dyslexia, the decoding process may be a challenge for several reasons. They may be unable to differentiate between certain sounds (such as "p" and "b"), or they may see (perceive) the letters spaced incorrectly, somewhat like this:

Thew ord sare notsp aced cor rect ly
Thewordsareallpushedtogether

The specific cause of dyslexia is not known, and there are probably many causes. At least 14 areas of the brain are involved in reading. Learning disabilities are generally thought to be a result of subtle miscues in the organization of these areas. The messages the brain is sending seem to get jumbled up or confused. People with dyslexia may be able to hear and see (perceive) perfectly well, but what they hear and see looks different and sounds different than it would to most people. The miscues that cause dyslexia are thought to be present at birth and influenced by heredity. Approximately 5% to 10% of school-age children have some type of learning disability.

Typically, with dyslexia, there is a wide gap between IQ and school achievement. This gap cannot be attributed to deafness, blindness, poor teaching at school, lack of stimulation at home, or emotional factors. Often, a child's ability to think creatively and abstractly is quite good, but his basic reading and spelling skills are weak. Dyscalculia, or problems with math skills, may also be present.


A child with dyslexia who observes peers reading and making progress may feel "stupid" because he can't keep up. And as he continues to experience failure in the classroom, his self-esteem may take a beating. Educators emphasize the importance of identifying a learning disability as early as possible, so the child can be taught in alternative ways and achieve success in school.

Diagnosing Dyslexia
Schools, community-based psychologists, and many hospitals offer testing of children who appear to be at risk for a learning disability. Candidates for testing include children with at least normal intelligence who are not doing as well in school as predicted by standard intelligence tests. The comprehensive evaluation for a learning disability involves a series of cognitive, linguistic, social/emotional, and academic tests. Once a diagnosis is made, a treatment plan can be developed. Treatment, or helping the child find ways to learn, requires the close cooperation of parents and teachers and may also involve reading therapists or tutors.

Fortunately, most children with dyslexia are able to learn strategies and techniques that allow them to stay in the regular classroom. The least restrictive environment is usually best, provided adequate and appropriate learning support is given. However, some amount of "special education" placement may be necessary for the child to get the help he needs to work with and around the disability.

Learning Strategies That Work
Compensatory strategies provide ways for the child to get around the effects of dyslexia. They include audiotaping lectures or texts, using flashcards to learn new things, positioning the child in the front of the classroom to better observe his teacher, and using a computer with spelling and grammar checks.

Remediation is a method of teaching that allows the child to get the information he needs in a way that he can learn. There are three components to remediation:

  1. Teaching small units
  2. "Over-teaching"
  3. Multisensory presentation

By presenting small units of information, the child can better concentrate on and master difficult material a little bit at a time. For example, word families are introduced, such as the "at" family - cat, fat, mat, etc. The child learns to think about the sounds of the letters and the shape his mouth makes saying those sounds. The information is taught in a meaningful context several times, more so than would seem necessary. The over-teaching component is important. The repetition helps the dyslexic student, who tends to "lose" information quickly.

As the child is saying and reading the words, he is tracing them as well - getting the "feel" of the words. Visual displays are included with verbal instructions. Hearing, saying, seeing, and touching the learned material provides multisensory reinforcement. It is sometimes difficult to determine a dyslexic child's precise area of deficit. Multisensory presentation teaches to all the senses in hopes that faster learning is accomplished. It's extremely helpful for parents to learn and practice these techniques at home as well.

Spelling Success
Because a student with dyslexia, even with appropriate intervention, often finds school a struggle, the development of his healthy self-image is at risk. For that reason, parents are advised to focus on activities which the child may find easier and at which he may even excel, such as sports, hobbies, or collecting. Music, art, drama, or volunteering also may help the child feel and be special. Experts agree that dyslexia is not necessarily an impediment to success; many dyslexics are in fact gifted in some way. Dyslexia often provides that extra drive, that spark of creativity, that comes from developing different ways of thinking and working around a system.

There are many famous people who have achieved remarkable success in spite of, or perhaps because of, their disability. They include some of the most imaginative thinkers of our times: Winston Churchill, Walt Disney, Albert Einstein, and Thomas Edison. Entertainers Tom Cruise, Whoopi Goldberg, and Cher have dyslexia, as do athletes Nolan Ryan and Bruce Jenner. Just because a child has dyslexia, it doesn't mean his parents or teachers should have lower expectations for him. The artists, athletes, scientists, and statesmen mentioned here were all able to achieve great things despite their trouble with reading.

Reviewed by: Susan Stine, MD
Date reviewed: April 2001

Source:  KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/