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
Special Needs Resources

INDEX Page

Naz's Special Needs Resources
The tips on the following pages have been compiled because of a demand by parents and caregivers of children with special needs for inexpensive alternatives to daily living aids and ideas.
 
Click on the category of your choice or just browse through all the suggestions.
 
  • Clothing & Accessories
  • Communication
  • Daily Living & Life Skills
  • Fun and Games
  • Behavior Modification
  • Accessibility in New Home Construction or Renovations
  • Home Therapy
  • Latex Allergy
  • Pantry Remedies & Substitutions
  • School
  • Sensory Issues
  • Tube Feeding

  • Children With Disabilities Web site offers families, service providers, and other interested individuals information about advocacy, education, employment, health, housing, recreation, technical assistance, and transportation covering a broad array of developmental, physical, and emotional disabilities. http://www.childrenwithdisabilities.ncjrs.org/

    Federal Resources - Technical Assistance

    Below is a list of resources for technical assistance for children with disabilities.

    • Able Generation
      Able Generation designs and manufactures pediatric therapeutic furniture for children with special needs/early intervention.

    • AbilityHub - Assistive Technology for computers and disability
      AbilityHub is an assistive technology related web site for people with a disability who find operating a computer difficult, maybe even impossible. AbilityHub is a starting point for finding information concerning assistive technology and will direct you to adaptive equipment and alternative methods available for accessing computers.

    • Adaptive Environments Center, Inc.
      Its mission is to promote, facilitate, and advocate for international adoption of policies and designs that enable every individual, regardless of disability or age, to participate fully in all aspects of society.

    • Alliance for Technology Access
      The mission of the Alliance for Technology Access is to connect children and adults with disabilities to technology tools.

    • Assistive Technology Training Online (ATTO)
      The Assistive Technology Training Online Project provides internet-based training in both general and specific areas of adapted computer use. We focus on AT applications that address the needs of students with disabilities in elementary classrooms.

    • Technical Assistance and Dissemination Projects of the Office of Special Education Programs
      Provides address and descriptions of the many resources available under the Office of Special Education Programs.
    • The Center for Accessible Technology
      The Center for Accessible Technology (CforAT) began in 1983 as the Disabled Children's Computer Group, a cooperative effort by parents, professionals and people with disabilities to harness the emerging power of computer technology to aide children with disabilities. CforAT has grown to become a consumer-based technology resource and demonstration center for adults and children with disabilities, families, teachers, and professionals.

    • Innovative Products
      Innovative Products is dedicated to manufacturing mobility devices that assist children with severe physical disabilities, such as cerebral palsy and spina bifida, so they may interact on the same level as their able-bodied peers. Acting as a catalyst, our customized mobility devices allow children the freedom to initiate exploration, enhance problem-solving experiences, and increase self esteem and peer perception.
    • University Affiliated Programs (UAPs)
      UAPs are located at major universities and teaching hospitals in all states, the District of Columbia, the U.S. Virgin Islands, Puerto Rico and territories. UAPs target and engage in activities to support the independence, productivity, integration and inclusion into the community of individuals with developmental disabilities and their families.

    State/Local Resources

    Learn about agencies, organizations, programs, and other information in your area by State, Territory or Federally Recognized Indian Tribe.

    Recreation

    Below is a list of resources on recreation for children with disabilities.

    • Achievable Concepts
      The Children with Disabilities pages outlines specialised recreation products such as trikes and cycling options, beach wheelchair, Mt Buggy, adapted games for co-ordination and skill and cognitive games. It also covers specialised books for children which cover a number of disabilities such as epilepsy and asthma.

    • Camp Lee Mar
      A special camp for special kids.

    • Fun-Attic Sports and Toys
      Many of our products adapt very well to the special needs of handicapped participants.
    • Granny's Touring Trikes
      We manufacture recumbent trikes for children age 10 and above, seniors and people who can not ride a regular bike due to lack of balance or other disabilities. These trikes are the modern recumbent style which is fun to ride and much safer, faster and easier to pedal than the old style trikes. We also make recumbent trikes with electric power assist.

    • Make-A-Wish Foundation
      Grants wishes of children with terminal or life-threatening illnesses.

    Family

    Below is a list of resources for families with children with disabilities.

    • @ctive Teen
      @ctive Teen is managed by teens with disabilities for teens with disabilities. We are an online cyber community where we can socialize, educate one another and just have fun together.
    • KidPower
      KidPower Family Support Resource is a support and informational non-profit organization for families whose children are mildly affected by cerebral palsy and/or other disabilities.
    • The Fathers Network
      Our mission is to celebrate and support fathers and families raising children with special health care needs and developmental disabilities.
    • Sibling Support Project
      To increase the availability of peer support and educational programs for brothers and sisters of people with special health and developmental needs.

    Youth to Youth

    Fun Things To Do!

    Find fun things to do that focus on children with disabilities. Information such as camps, conferences, and more are found here.

    Kids Next Door
    An exciting site sponsored by the U.S. Department of Housing and Urban Development.

    Puzzles & Games
    PCSOnline.org - An interactive experince for the entire community.

    PACER - The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents. With assistance to individual families, workshops, and materials for parents and professionals, and leadership in securing a free and appropriate public education for all children, PACER's work affects and encourages families in Minnesota and across the nation.

  • Click on symbol to go to PACER's information on that topic:

    The Juvenile Justice Training Program trains professionals to identify the needs of youths whose disabilities may place them at risk for involvement with the justice system. includes information on:

    What Parents Need to Know About Children with Disabilities and the Delinquency System

    Effects of Disabilities in the Justice System

    Project Success to Date

    A Slide into Chaos: Adolescent Depression, 1996

    A list of Resources for the Juvenile Justice Program

    The Project for Parents of Children with Emotional / Behavioral Disorders (EBD) offers individual assistance related to education, social services, mental health or corrections issues, and provides workshops and written information to parents of children and adolescents with EBD. The project has organized parent support groups throughout Minnesota and can refer parents to other parents or groups in their area of the state. includes information such as:

  • Does My Child Have an Emotional or Behavioral Disorder? What to look for in your child.
  • Preventing and Treating Challenging Behavior in Young Children
  • Behavioral Interventions Guide

    The Health project of PACER Center provides a central source for families of children and young adults with disabilities to obtain support, advocacy, and information about the health care system.  includes good information such as:

    Legislation Page

    Plus many more excellent resources.