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
Wishes Can Come True-Children's Wish Foundations

INDEX Page

Wishes can't wait!
 
Some Wishes Can Come True:
The following is a list of national and international organizations whose web sites
indicate that they are nonprofit 501(c)(3) organizations that grant "wishes" to
children with serious or life-threatening illnesses.   Many of these organizations
have state or local chapters.   Wish organizations that serve specific states only
can be found in the DRM Regional Resources Directory. (Click on name to be taken
to their website)
 
Children's Wish Foundation International
CWFI fulfills wishes for children under the age of eighteen suffering from a life-
threatening illness. Unlike other wish granting organizations, we do not have
a minimum age, however, if the child's health allows it,  we try to wait to fulfill
the wish until the child is old enough to fully enjoy and remember the experience.
P.O. Box 28785, Atlanta, GA 30358
Phone: 800-323-9474 Fax: 770-393-0683
 
Florida Angel Trips, Inc.
www.floridaangeltrips.org
What we do at Florida Angel Trips Inc. is organize travel packages to Florida.
Packages may include attraction tickets, the beach, lodging, food as well as
travel accommodations. The packages depend solely on the terminally ill individual's
request.  Our purpose for Florida Angel Trips Inc. is to provide everlasting
memories for the family members of loved one's who have been diagnosed with
a terminal illness no matter what the age!
 
Give Kids The World partners with more than 300 wish-granting organizations to
make the Central Florida wish a reality.  Families that visit Give Kids The World
must be referred by one of these wish-granting organizations.  Children ages
3-18, battling a life-threatening illness as deemed by a medical doctor, are eligible,
regardless of income. A welcome reprieve is just a phone call away.  Contact your
local wish-granting organization to learn if your child is eligible for a wish, or call
1-800-995-KIDS, and Give Kids The World can refer you to the wish-granting
organization in your community. email: wish@childrenswish.org 
 
Grant-A-Wish Foundation - 1-800-933-5470
  • Wish granting -The Wish Granting Program is a very special program
    that can, under the right circumstances, provide small miracles for children
    with short life expectancies and their families.  This program is open to
    children ages 4-17.
  • Respite Housing-Enduring the stress and uncertainty of a seriously ill
    childs medical treatment can be mentally and physically exhausting.
    By providing families the opportunity to getaway from the stressful
    routine of doctor appointments and medical treatments for a week or
    even a few days allows children with life-threatening illnesses and their
    families time to rejuvenate themselves and even have a little fun.

  • Hospital Housing--Hospital Housing assists families with finding a place to
    stay when they must travel far from home for medical treatment. Through
    our partnerships with many hotels across the country, Grant-A-Wish/
    The Children's Promise Foundation seeks lodging for families where daily
    commuting for medical care is not possible
  • Dreamsurfer Network--The Dreamsurfer Network is an on-line education
    and support network for critically ill teens.  The Network provides a
    community of friendship and understanding by linking teens from throughout
    the world in an encouraging, confidential and counselor-supervised setting.
    The password protected site allows participants to openly express their
    thoughts and feelings with others experiencing similar circumstances.
    Besides the opportunity to meet other teens, the Web site features a
    library, games, chat sessions, general medical information and periodically,
    the site hosts an Internet based camp! A trained counselor with a master's
    in social work helps to manage the Web site and monitor the chat sessions.
  • Hospital Dream Boxes-Grant-A-Wish maintains two Dream Boxes in each
    participating hospital critical care clinic. When children are undergoing stressful
    and often times painful treatment, the medical staff have the children choose
    a special focus toy from the Focus Dream Box to encourage them and keep
    their minds captivated during this difficult time. After their treatment, the
    children may then take a toy home from the Prize Dream Box. Working together,
    the two Dream Boxes have a positive and often profound effect on the way
    children cope with hospital treatments.

  • Support Group Sponsorship-Teenagers and children with life-threatening illnesses
    can greatly benefit from knowing other children with similar circumstances. The
    groups provide peer support as well as an opportunity to just have some good
    old fashion fun. Grant-A-Wish offers logistical assistance to existing support
    groups in order to help them be effective. This includes opportunities ranging
    from helping them find meeting space to offering off-season retreats using the
    accommodations at The Children's House By The Sea.
Kids Wish Network (813) 891-9374 or toll free at (888) 918-9004  Kids Wish Network is a
federally recognized 501(c)3 nonprofit charitable organization whose sole mission is to grant
wishes to children with life-threatening illnesses. Its headquarters are at 160 Scarlet Boulevard,
Oldsmar, FL 34677.Kids Wish Network is currently registered in all 50 states.
 
Make-a-Wish Foundation of America - Local Chapters, National Office, and International Children under the age of 18 with a life-
threatening illness are potentially eligible for a wish. After a child is referred to the Make-A-
Wish Foundation®, the Foundation will contact the child's treating physician to determine if
the child is medically eligible for a wish, based on the medical criteria established by the Make
-A-Wish Foundation of America. In addition, a child cannot have received a wish from another
wish-granting organization. How Wishes are Granted The Make-A-Wish Foundation accepts
referrals for potential wish children from parents or guardians of the child, medical
professionals, or the children themselves. If you believe you know a child that might qualify
 
Special Wish Foundation - To enhance the quality of life for those children/adolescents
having a life-threatening or terminal disorder by allowing their special wish to become reality.
1) Child must be diagnosed as having a life-threatening disorder and
2) Child must be under the age of 21. Immediate families are included in the granting of wishes,
whenever possible. 
For information on A Special Wish location nearest you E-Mail: spwish@coil.com , or click the
drop-down menu that applies to your area at this website http://www.stcharleswrestling.com/spwish/notrails/index_chapters1.html
 
Starlight Children's Foundation - 323-634-0080  Working with more than 850 hospitals
worldwide, the Foundation provides an impressive menu of both in-patient and outpatient
programs and services. We address the needs of seriously ill children and their families
through six core programs, some directed specifically to the hospital environment, others
designed to support a childs eventual return to home and daily routine. Understanding that
when a child is sick the whole family suffers, our programs always incorporate the entire
family. To find out more about your local chapter, click HERE.  E-Mail us at: info@starlight.org
  • Wishes-Starlight grants wishes to all kinds of seriously ill children,
    and includes loved ones
  • Fun Centers--is a mobile entertainment unit containing a TV monitor,
    VCR and Nintendo game system. Fun Centers roll right up to the side
    of the bed, or almost anywhere, to provide much needed play time
    during a childs hospital stay.

  • Kids Activity Network-brings families together through an array of local
    activities and events. A family can enjoy a professional sporting event,
    experience the thrill of a theme park, see live plays or the latest hit
    movie, or attend one of the many theme parties each chapter organizes
    throughout the year. These special events allow families to reconnect
    with each other and for parents and children alike to meet others who
    are facing similar challenges.
Sunshine Foundation 1-800-767-1976
  • Refer a Child--Before referring a child to the Sunshine Foundation you
    must have permission from that child's parent(s) or legal guardian(s).
    After we receive the referral, we will mail an application to the child's
    parents within two weeks
  • How are dreams granted?-Along with the application, we must also
    receive a letter from the child's doctor and a recent copy of the family's
    1040 tax return.  Once all of these documents are received, the child's
    application is processed and goes for approval

  • Dreamlifts  Sunshine has sponsored more than 69 Dreamlifts, which
    included over 80 chartered airplanes. This is Sunshine's way of giving
    groups of seriously ill, physically challenged and abused children that
    special day in their favorite place...the Magic Kingdom®.

Wishes can't wait
 
Some Wishes Can Come True:
The following is a list of national and international organizations whose web sites indicate that they are nonprofit 501(c)(3) organizations that grant "wishes" to children with serious or life-threatening illnesses. Many of these organizations have state or local chapters. Wish organizations that serve specific states only can be found in the DRM Regional Resources Directory. (Click on name to be taken to their website)
Brass Ring Society - Chapter locations by state http://www.worldramp.net/brassring/chapters.html

Children's Wish Foundation International -CWFI fulfills wishes for children under the age of eighteen suffering from a life-threatening illness. Unlike other wish granting organizations, we do not have a minimum age, however, if the child's health allows it, we try to wait to fulfill the wish until the child is old enough to fully enjoy and remember the experience. P.O. Box 28785, Atlanta, GA 30358
Phone: 800-323-9474 Fax: 770-393-0683

Florida Angel Trips, Inc.
www.floridaangeltrips.org
What we do at Florida Angel Trips Inc. is organize travel packages to
Florida. Packages may include attraction tickets, the beach, lodging, food
as well as travel accommodations. The packages depend solely on the
terminally ill individual's request. Click To register a candidate. Our purpose
for Florida Angel Trips Inc. is to provide everlasting memories for the family
members of loved one's who have been diagnosed with a terminal illness
no matter what the age!

Give Kids the World - Give Kids The World partners with more than 300 wish-granting organizations to make the Central Florida wish a reality.  Families that visit Give Kids The World must be referred by one of these wish-granting organizations.  Children ages 3-18, battling a life-threatening illness as deemed by a medical doctor, are eligible, regardless of income. A welcome reprieve is just a phone call away.  Contact your local wish-granting organization to learn if your child is eligible for a wish, or call 1-800-995-KIDS, and Give Kids The World can refer you to the wish-granting organization in your community.
email:
wish@childrenswish.org  Foundation Listing in
Word 97 format (216k)

Grant-A-Wish Foundation - 1-800-933-5470

  • Wish granting -The Wish Granting Program is a very special program that can, under the right circumstances, provide small miracles for children with short life expectancies and their families.  This program is open to children ages 4-17.
  • Respite Housing-Enduring the stress and uncertainty of a seriously ill childs medical treatment can be mentally and physically exhausting. By providing families the opportunity to getaway from the stressful routine of doctor appointments and medical treatments for a week or even a few days allows children with life-threatening illnesses and their families time to rejuvenate themselves and even have a little fun.
  • Hospital Housing-Hospital Housing assists families with finding a place to stay when they must travel far from home for medical treatment. Through our partnerships with many hotels across the country, Grant-A-Wish/The Children's Promise Foundation seeks lodging for families where daily commuting for medical care is not possible
  • Dreamsurfer Network-The Dreamsurfer Network is an on-line education and support network for critically ill teens.  The Network provides a community of friendship and understanding by linking teens from throughout the world in an encouraging, confidential and counselor-supervised setting. The password protected site allows participants to openly express their thoughts and feelings with others experiencing similar circumstances. Besides the opportunity to meet other teens, the Web site features a library, games, chat sessions, general medical information and periodically, the site hosts an Internet based camp! A trained counselor with a master's in social work helps to manage the Web site and monitor the chat sessions.
  • Hospital Dream Boxes-Grant-A-Wish maintains two Dream Boxes in each participating hospital critical care clinic. When children are undergoing stressful and often times painful treatment, the medical staff have the children choose a special focus toy from the Focus Dream Box to encourage them and keep their minds captivated during this difficult time. After their treatment, the children may then take a toy home from the Prize Dream Box. Working together, the two Dream Boxes have a positive and often profound effect on the way children cope with hospital treatments.
  • Support Group Sponsorship-Teenagers and children with life-threatening illnesses can greatly benefit from knowing other children with similar circumstances. The groups provide peer support as well as an opportunity to just have some good old fashion fun. Grant-A-Wish offers logistical assistance to existing support groups in order to help them be effective. This includes opportunities ranging from helping them find meeting space to offering off-season retreats using the accommodations at The Children's House By The Sea.

Kids Wish Network (813) 891-9374 or toll free at (888) 918-9004  Kids Wish Network is a federally recognized 501(c)3 nonprofit charitable organization whose sole mission is to grant wishes to children with life-threatening illnesses. Its headquarters are at 160 Scarlet Boulevard, Oldsmar, FL 34677.Kids Wish Network is currently registered in all 50 states.

Make-a-Wish Foundation of America - Local Chapters, National Office, and International Children under the age of 18 with a life-threatening illness are potentially eligible for a wish. After a child is referred to the Make-A-Wish Foundation®, the Foundation will contact the child's treating physician to determine if the child is medically eligible for a wish, based on the medical criteria established by the Make-A-Wish Foundation of America. In addition, a child cannot have received a wish from another wish-granting organization.How Wishes are Granted The Make-A-Wish Foundation accepts referrals for potential wish children from parents or guardians of the child, medical professionals, or the children themselves. If you believe you know a child that might qualify for a wish, please contact your local Make-A-Wish® chapter or Refer a child for a wish with their  online wish referral form

Special Wish Foundation - To enhance the quality of life for those children/adolescents having a life-threatening or terminal disorder by allowing their special wish to become reality. 1) Child must be diagnosed as having a life-threatening disorder and 2) Child must be under the age of 21. Immediate families are included in the granting of wishes, whenever possible. For information on A Special Wish location nearest you E-Mail: spwish@coil.com , or click the drop-down menu that applies to your area at this website http://www.stcharleswrestling.com/spwish/notrails/index_chapters1.html

Starlight Children's Foundation - 323-634-0080  Working with more than 850 hospitals worldwide, the Foundation provides an impressive menu of both in-patient and outpatient programs and services. We address the needs of seriously ill children and their families through six core programs, some directed specifically to the hospital environment, others designed to support a childs eventual return to home and daily routine. Understanding that when a child is sick the whole family suffers, our programs always incorporate the entire family. To find out more about your local chapter, click HERERe: Medicine Program (Carmen)E-Mail us at:
info@starlight.org

  • Wishes-Starlight grants wishes to all kinds of seriously ill children, and includes
    loved ones
  • Fun Centers-is a mobile entertainment unit containing a TV monitor, VCR and Nintendo game system. Fun Centers roll right up to the side of the bed, or almost anywhere, to provide much needed play time during a childs hospital stay.
  • Kids Activity Network-brings families together through an array of local activities and events. A family can enjoy a professional sporting event, experience the thrill of a theme park, see live plays or the latest hit movie, or attend one of the many theme parties each chapter organizes throughout the year. These special events allow families to reconnect with each other and for parents and children alike to meet others who are facing similar challenges.
Sunshine Foundation 1-800-767-1976
  • Refer a Child-Before referring a child to the Sunshine Foundation you must have permission from that child's parent(s) or legal guardian(s).After we receive the referral, we will mail an application to the child's parents within two weeks
  • How are dreams granted?-Along with the application, we must also receive a letter from the child's doctor and a recent copy of the family's 1040 tax return.  Once all of these documents are received, the child's application is processed and goes for approval
  • Dreamlifts Sunshine has sponsored more than 69 Dreamlifts, which included over 80 chartered airplanes. This is Sunshine's way of giving groups of seriously ill, physically challenged and abused children that special day in their favorite place...the Magic Kingdom®.
  • Contact Us