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
Disability Resources

INDEX Page

Connect for Kids program of the Benton Foundation. Searchable
state-by-state listing of advocacy and other helpful programs
for kids in your state.
 
Information on Free Medications for Low-Income Families
Some pharmaceutical companies offer medication assistance programs
to low-income individuals and families.These programs typically require
a doctors consent and proof of financial status. They may also require
that you have either no health insurance, or no prescription drug benefit
through your health insurance. Please contact the pharmaceutical company
directly for specific eligibility requirements and application information. http://www.nami.org/helpline/freemed.htm
 
Insure Kids Now - Kids that do not currently have health insurance
are likely to be eligible, even if you are working. The states have
different eligibility rules, but in most states, uninsured children 18 years
old and younger, whose families earn up to $34,100 a year (for a family
of four) are eligible. To learn more, go to Your State's Program or
make a free call to 1-877-KIDS-NOW for more information.

Legal Resources

The Special Ed Advocate
Pete and Pam Wright's Web Site
http://www.wrightslaw.com/

Idea Practices
http://www.ideapractices.org

Office of Special Education and Rehabilitative Services (OSERS)
The OSERS "supports programs that assist in educating children with
special needs, provides for the rehabilitation of youth and adults with
disabilities, and supports research to improve the lives of individuals

Edlaw, Inc.

Includes SpeciaLaw, "Full texts of statutes, regulations, and
administrative interpretations"
http://www.edlaw.net/

See
Links: Legal Resources for More Information

Individual Education Plans (IEPs)

Individual Education Program (IEP) Parent Preparation and Planning
http://www.tayloredmktg.com/dyspraxia/iep.html

Special Education -- General

Special Education Resources on the Internet (SERI) 
SERI lists many links to other sites containing information on a
number of subjects including: general disability information, legal
and law resources, parents and educators' resources, special
education discussion groups, medicine and health, learning
disabilities, and speech impairment.
http://www.hood.edu/seri/serihome.htm

Inclusion

Inclusion Press Home Page
http://www.inclusion.com/

Inclusion Links
http://www.asri.edu/cfsp/brochure/inclinks.htm

Collaborative Teaching: Special Education for Inclusive Classrooms
This site offers an online "text book". Ten chapters of good background
on the ideal of inclusive education, the law, and practically making inclusion
 
  • Links: General Disability Information Sites to be familiar with.
  • Books: General Recommendations ~ Disabilities The ones you need to know about.

    Children with Disabilities and Childcare
    An overview of disabled childrens rights in relationship with childcare centers.

    The Foundation for Exceptional Children encourages, enhances,
    and empowers children and youth with disabilities, gifts and talents,
    helping them to attain their greatest potential.

    The Scholarship Awards for undergraduate students with exceptionalities.

    Special Child Magazine
    Publication offers resources to parents of children with special needs. Features tips, bulletin board and articles on family issues.

    Children's Disabilities and Special Needs - http://www.childrensdisabilities.info/

  • -------------------------------------------------------

    ABLEDATA is a federally funded project whose primary mission is
    to provide information on assistive technology and rehabilitation
    equipment available from domestic and international sources to
    consumers, organizations, professionals, and caregivers within
    the United States.
     
    nonprofit organization that assists and encourages parental
    involvement in education, wherever that education takes place:
    in public school, in private school, or at home. AllPIE offers a
    newsletter (Options in Learning), annual conferences and retreats,
    a book catalog, workshops, lending library and more.
     
    Alliance for Technology Access Our mission is to connect
    children and adults with disabilities to technology tools.
    Today's technology is redefining what it means to have a
    disability.
     
    The Apraxia-Kids website is sponsored by a new organization,
    the Childhood Apraxia of Speech Association of North America
    (CASANA). The site is designed to provide accessible and under-
    standable information regarding Childhood Apraxia of Speech
    (also called Developmental Apraxia of Speech, Developmental
    Verbal Dyspraxia, and other terms).
     
    The Council for Exceptional Children (CEC) is the largest
    international professional organization dedicated to improving
    educational outcomes for individuals with exceptionalities,
    students with disabilities, and/or the gifted.

    disAbility.gov
    Created by the Presidential Task Force on Employment of Adults With Disabilities. Users can learn about what services the government provides

       Parent's Guide: Doctors, Disabilities, and the Family #PA7

    This guide offers suggestions on how families with a child who may have a disability and/or special health care needs can find a primary health care provider or pedicatrician. Suggestions are included for those who use private physicians, public health clinics, or Indian Health Services. The document concludes with several lists of questions parents might want to ask--before the doctor sees their child, when scheduling an appointment, when the doctor has seen the child, about general checkups and development, medications, tests, referrals to specialists, surgery, and hospitalization.

            Enable empowers people with disabilities to achieve their
            goals (in work, home, school and play) in harmony with
            the community. Enable provides assessment, instruction,
            therapy and support for children and adults with disabilities
            and their families.
     
           
            new project that aims to inform and educate families and
            advocates about the Individuals with Disabilities Education
            Act of 1997 (IDEA 97). The Partnership helps to ensure that
            the changes made in IDEA are understood by families and
            advocates and are put into practice at local and state levels.
     
           
            The Federation for Children with Special Needs is a center for
            parents and parent organizations to work together on behalf of
            children with special needs and their families. We can help!
            Organized in 1975 as a coalition of parent groups representing
            children with a variety of disabilities, the Federation operates a
            Parent Center, which offers a variety of services to parents, parent
            groups, and others who are concerned with children with special
            needs.
     
           
            Ican.com  A place where people affected by disabilities can
            take advantage of the community building power of the
            Internet. A one-stop resource for information, guidance,
            conversation and companionship.
     
       
            MUMS: National Parent to Parent Network   a national
            organization for parents or care providers of a child with
            any disability, rare or not so rare disorder, chromosomal
            abnormality or health condition. MUMS' main purpose is to
            provide support to parents in the form of a networking
            system that matches them with other parents whose children
            have the same or similar condition.
     
            NICHCY is the national information and referral center that
            provides information on disabilities and disability-related
            issues for families, educators, and other professionals. Our
            special focus is children and youth (birth to age 22).