Juvenile-HD

HOME

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
Guides To Disability Issues

INDEX Page

Also see: A Parents Guide To Disabilities.pdf

The following are some National Information Center for Children
and Youth With Disabilities (NICHY) guides that might be of help
to some.  All are in PDF format and where the guide is available
in Spanish, I've included it.
 
About Public Agencies (GR4)
Learn more about 9 public agencies that provide assistance to
people with disabilities and their families. 2002, 2 pages
English
http://www.nichcy.org/pubs/genresc/gr4.pdf
Spanish http://www.nichcy.org/pubs/spanish/gr4sp.pdf

Assessing Children for the Presence of a Disability:
A Bibliography for Families (BIB2)  To be eligible for
special education, a child must first be assessed to see
if he or she has a disability.  These books and articles will 
help families learn more about the assessment process.
English
http://www.nichcy.org/pubs/bibliog/bib2.pdf

Assistive Technology: Becoming an Informed Consumer
(ND13) Assistive technology refers to the special devices
that are available to help individuals with disabilities in daily
life -- electronic communication aids, a print enlarger on a
computer screen, speech synthesizers, switches, to name
a few.   This issue explores the subject of assistive technology
through several articles, including: tips for consumers, a
parent's perspective, legislation, effective use, and how to
integrate technology into a student's IEP. 1989, Resources
updated 1996, 20 pages.
English
http://www.nichcy.org/pubs/outprint/nd13.pdf

Attention-Deficit/Hyperactivity Disorder (AD/HD)
(FS19)  The ADHD fact sheet presents an overview of the
disability--its characteristics and symptoms, how common it
is, and educational implications. Tips are given to parents
and teachers for addressing the special needs of a child with
ADHD.  The fact sheet concludes with a list of helpful books
and organizations.
English
http://www.nichcy.org/pubs/factshe/fs19.pdf
Spanish http://www.nichcy.org/pubs/spanish/fs19sp.pdf

Attention-Deficit/Hyperactivity Disorder (AD/HD)
(Briefing Paper) (FS14) This publication provides information
about  the characteristics of AD/HD, how to help children at
home and school,  and the legal responsibilities of schools
to provide services to students with AD/HD.
English
http://www.nichcy.org/pubs/factshe/fs14.pdf
Spanish  http://www.nichcy.org/pubs/spanish/fs14sp.pdf

Children with Disabilities: Understanding Sibling Issues
(ND11)  Having a brother or sister with a disability can powerfully
affect siblings. Find out how, often from the words of the siblings
themselves, who write many of the articles in this News Digest.
1988, Resources updated 1994, 12 pages. TEXT VERSION ONLY
English
http://www.nichcy.org/pubs/outprint/nd11txt.htm

Communicating Through Letter Writing- Special Education
and Related Services(PA9) This guide is rich in examples of
the letters you might write to your child's school across the
years.  Ask for an evaluation, express concern about progress,
request an IEP meeting, even praise the school's efforts! Learn
more about what makes for an effective letter. 1991, 20 pages.
English
http://www.nichcy.org/pubs/parent/pa9.pdf
Spanish http://www.nichcy.org/pubs/spanish/pa9sp.pdf

Directory of Summer Camps (CAMPS1)
Plan for the summer using this listing of directories and Web
sites about summer camps for children with disabilities. 2002,
2 pages
English
http://www.nichcy.org/pubs/genresc/camps.pdf

Disability Awareness (BIB13)
Interested in disability awareness issues? Integrate a new
student into your classroom, plan a special instructional unit,
organize a Girl Scout information fair, write a school report on
this important topic.   Anyone concerned with disability
awareness will find this resource list a good starting point
for identifying curricula, books, articles, videos, and other
materials on the subject. 2000, 12 pages.
English
http://www.nichcy.org/pubs/bibliog/bib13.pdf

Education of Children and Youth with Special Needs:
What do the Laws Say? (ND15)  The educational and civil
rights of children and youth with disabilities are governed
by many important federal laws. Three, in particular, are the
focus of this News Digest: (1) P.L. 94-142, the Education
of the Handicapped Act, now known as the Individuals with
Disabilities Education Act; (2) Section 504; and (3) the
Carl D. Perkins Vocational Education Act. Many others are
briefly discussed as well. 1996, 16 pages.
English
http://www.nichcy.org/pubs/outprint/nd15.pdf
Spanish http://www.nichcy.org/pubs/spanish/spannd.asp#nd15sp

Estate Planning (ND18)
Plan ahead for your child with a disability by writing a
specialized will and trust that will protect your child's
eligibility for government benefits and provide for his or
her needs.   Also read about how to write a Letter of Intent,
which will give future caregivers an in-depth understanding
of your son or daughter with a disability. 1992, 20 pages.
English
http://www.nichcy.org/pubs/outprint/nd18.pdf

General Information about Disabilities (GR3)
Read the definitions of the 13 categories of disabilities
under which a child with a disability may qualify for special
education services under  the IDEA (Individuals with Disabilities
Education Act). 2002, 4 pages.
English
http://www.nichcy.org/pubs/genresc/gr3.pdf
Spanish http://www.nichcy.org/pubs/spanish/spangr.asp#gr3sp

Individualized Education Programs (IEPs) (LG2)
What does the IDEA require when a student's IEP is
developed? This publication is a verbatim reprinting of (a)
federal regulations about IEPs, and (b) Appendix A (formerly
Appendix C) to the IDEA '97, which is a series of questions
and answers about federal regulations on the IEP. 1999,
32 pages.
English
http://www.nichcy.org/pubs/ideapubs/lg2.pdf

Interventions for Chronic Behavior Problems (RB1)
This publication is meant to help schools answer the
question,  "What does the research tell us?" about
promising interventions  for students with a history of
behavior problems. It's important to know that there
is a tremendous body of research availableon this
subject, covering a wide variety of students, situations,
and settings. We also include a short overview that you
can use and adapt to help your students and develop
your own programs.
English
http://www.nichcy.org/pubs/research/rb1.pdf

Options After High School for Youth with Disabilities
(TS7)  This Transition Summary helps youth with disabilities,
their families, and the professionals who work with them
plan for the young person's transition to the adult world.
An overview of adult service systems (e.g., Social Security
Administration, Vocational Rehabilitation) is given.  Many
employment options are also explored. 1991, Resources
updated  1994, 28 pages.
English
http://www.nichcy.org/pubs/outprint/ts7.pdf

Parenting a Child with Special Needs (ND20)
When parents learn that their child has a disability, they
begin an unplanned journey. Starting with the article
"You Are Not Alone," this News Digest is written expressly
for parents to respond to their information needs and offer
perspectives from other parents. Professionals who work
with families will find it helpful in understanding more about
how having a child with a disability can affect the family.
1997, 24 pages.
English
http://www.nichcy.org/pubs/newsdig/nd20.pdf
Spanish http://www.nichcy.org/pubs/spanish/nd20sp.pdf

Planning a Move, Mapping Your Strategy (PA8)
So you're moving. You need a strategy! This publication
will help you think about such concerns as: learning the
new state's policies for special education and SSI benefits;
making sure you have your child's medical records; finding
parent and disability groups in your new location; and
ensuring that your child's school records (particularly the
IFSP or IEP!) come along, too. We give you a checklist of
the tasks that you'll want to complete before the moving
van shows up. 1994, 12 pages.
English
http://www.nichcy.org/pubs/parent/pa8.pdf

Positive Behavioral Support: A Bibliography for Families
(BIB4) For many students with disabilities, behavior is a real
concern to parents and other family members.   These
resources will help families understand  and positively
address the behavior challenges associated with disabilities
such as autism, attention-deficit/hyperactivity disorder
(AD/HD), behavior disorders, emotional disturbance, learning
disabilities, and mental retardation.
English
http://www.nichcy.org/pubs/bibliog/bib4.pdf

Questions and Answers about IDEA (ND21)
What are IDEA's requirements regarding evaluating and
educating children with disabilities? Core questions about the
special education  process, as mandated by IDEA, are asked
and answered, oftenwith quotes from the lawitself. 2000,
28 pages.
English
http://www.nichcy.org/pubs/newsdig/nd21.pdf
Spanish http://www.nichcy.org/pubs/spanish/spannd.asp#nd21sp

Questions Often Asked by Parents About Special Education
Services (LG1) This publication explains in easy-to-read terms
how students with disabilities access special education and related
services. 1999, 12 pages.
English
http://www.nichcy.org/pubs/ideapubs/lg1.pdf
Spanish http://www.nichcy.org/pubs/spanish/spidea.asp#lg1sp

Related Services (ND16)
Children with disabilities who are eligible for special education
may also receive related services according to their individual
needs. This may include such services as occupational and
physical therapy, speech-language pathology, transportation,
and special health care services. Learn more about the related
services listed in IDEA and the process by which students can
obtain them. 2001, 20 pages.
English
http://www.nichcy.org/pubs/newsdig/nd16.pdf
Spanish http://www.nichcy.org/pubs/spanish/nd16sp.pdf

Respite Care: A Gift of Time (ND12)
Respite care provides families with specialized temporary child
care. In recent years, more and more respite services have
become available, many on a sliding-fee scale. This issue
discusses types of respite care available and gives tips and
advice to parents seeking such care. 1996, 8 pages.
English
http://www.nichcy.org/pubs/outprint/nd12.pdf

Severe and/or Multiple Disabilities (FS10)
The Severe and/or Multiple Disabilities Fact Sheet presents a
short overview of these disabilities-- characteristics, incidence,
and educational implications--and concludes with a list of
helpful books and organizations.
English
http://www.nichcy.org/pubs/factshe/fs10.pdf

Sexuality Education for Children and Youth with Disabilities
(ND17) This News Digest addresses the concerns that parents
and professionals face in informing and guiding children and
young adults with disabilities in their social-sexual development
and in preparing them to make healthy, responsible decisions
about adult relationships. Many books and videos available on
human sexuality are listed, to assist parents and professionals
in obtaining the detailed materials necessary to support the
sexuality education of children with disabilities. 1992, 28 pages.
English
http://www.nichcy.org/pubs/outprint/nd17.pdf

Speech-Language Impairments (FS11)
The Speech and Language Impairments Fact Sheet presents a
short overview of this disability-its characteristics, incidence, and
educational implications-and concludes with a list of helpful books
and organizations.
English
http://www.nichcy.org/pubs/factshe/fs11.pdf
Spanish http://www.nichcy.org/pubs/spanish/fs11sp.pdf

Student's Guide to the IEP (ST1B)
Students with disabilities can be important participants in
developing their own IEPs! The audiotape in Set 1 features
several students, all of whom have disabilities, talking about
their experiences as active participants in the IEP process.
 
The accompanying student booklet guides students through
the process of learning how the IEP is developed, learning about
their own disability, listing their strengths and areas of need,
identifying what accommodations they need in school, developing
a list of goals and objectives for the year, talking with teachers
and parents, and preparing for and participating in the IEP
meeting. 2002, 12 pages.
English
http://www.nichcy.org/pubs/stuguide/st1.pdf
Transcript of Audio Tape http://www.nichcy.org/pubs/stuguide/st1scrpt.htm

Technical Assistance Guide: Helping Students with Cognitive
Disabilities Find and Keep a Job (TA3B)  This Technical Assistance
Guide is designed to assist families, transition specialists, employers,
and others in helping students with significant cognitive disabilities
find and keep a job.
English
http://www.nichcy.org/pubs/stuguide/ta3.pdf
Transcript of Audio Tape http://www.nichcy.org/pubs/stuguide/st2scrpt.htm

Travel Training for Youth with Disabilities (TS9)
Knowing how to use public transportation is an important skill for
many youth with disabilities. This Transition Summary looks at
training people with disabilities to use public transportation safely
and independently. It answers such questions as: What are the
essential components of a successful travel training program? What
specific skills do travelers need? What issues arise with specific
disabilities such as physical, cognitive, or  visual impairments?
1996, 24 pages.
English
http://www.nichcy.org/pubs/transum/ts9.pdf

Vocational Assessment: A Guide for Parents and Professionals
(TS6)  This issue of Transition Summary describes the importance
of vocational assessment in the educational process of students
with disabilities planning for the transition from school to work.
Vocational assessment is defined, its purposes are explained,
and the ways in which vocational assessment  can benefit teenagers
with special needs are discussed. Types of assessments  are
discussed as well, as are the roles that key professionals play in the
assessment process. 1990, 16 pages.
English
http://www.nichcy.org/pubs/outprint/ts6.pdf

Your Child's Evaluation (BP1)
This publication describes the steps the school system will take
to evaluate your child to determine if he or she has a disability
and is eligible for special education
English
http://www.nichcy.org/pubs/basicpar/bp1.pdf
Spanish http://www.nichcy.org/pubs/spanish/spanbp.asp#bp1sp

====================================================
Spanish Publications
Todas las publicaciones de NICHCY están disponibles aquí, gratis, en
nuestro sitio de Internet. Para su conveniencia, las ofrecemos en
versiones de texto solamente y
PDF http://www.nichcy.org/pubs/spanish/spanpubs.htm

Resources for Adults with Disabilities (ADT1)
This publication helps adults with disabilities identify organizations and
agencies designed to assist with their specific concerns and needs,
such as employment, postsecondary education, recreation, independent
living, and assistive technology.
English
http://www.nichcy.org/pubs/transum/adult.pdf