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
Resources

INDEX Page

Click on topic to be taken to that websites or URL (www.) if shown.
 
Attention Deficit Disorder is a disorder that creates the inability to stay focused for typical periods of time. Treatment programs and modifications are available.
 
About ADD/ADHD
Eileen Bailey maintains a comprehensive site of valuable ADD/ADHD information. From ADD/ADHD at About.

About's ADD/ADHD Resources
An extensive Library of valuable links created by Eileen Bailey, About's expert Guide to ADD. You will most definitely find clear-cut and current information.

ADHD News and Articles
Terry Matlen, ACSW is a psychotherapist that specializes in ADD/ADHD. This is a comprehensive site with one of the largest ADD professional directories on the Web. From A.D.D. Consults.

ADD Resource
The Web's only search engine and directory that is completely designed to meet the needs of ADD/ADHD.

ADHD Quiz
Become an expert. Mayo Clinic's Health Oasis offers an educational quiz on ADHD.

"ADHD: A Path to Success"
Dr. Lawrence Weathers has authored a book that "offers a new and refreshing perspective on attention deficit disorder that makes sense with your own personal daily experience." Extensive resources are available to families.

Alcohol and Teens with AD/HD
By Bob Seay
A startling relevance exists among teen drinking in kids who are AD/DH and/or have been diagnosed with conduct disorders.

Antidepressants, Stimulants, or Clonidine
Which medication will work best for your child? What are the risks? After reading the data provided, discuss this with your child's physician. From The ADHD Owner's Manual.

Children and Adults with Attention Deficit Disorder
http://www.chadd.org

"Helping Your Teen Plan Activities"
Sometimes teens need help in thinking through the details of an activity. Use this worksheet to help them understand the process of planning. From Eileen Bailey, our expert Guide to ADD.

LD In Depth on ADD/ADHD
"Here you'll find articles written by the leading experts, research findings reported by top researchers, and the latest news in the field of learning disabilities."

http://www.ldonline.org/ld_indepth/add_adhd/add-adhd.html

C.H.A.D.D. Children and Adults with ADD
A very worthwhile organization that focuses on education and support for families and children who are interested in learning more about ADD/ADHD.

Diet therapy for ADD
KidSource Online discusses the impact of the Feingold diet on ADD/ADHD symptoms.

Discipline in the Schools
CHADD has written a timely position paper in regard to disciplining the ADD child in the school system. 

Family Village
Attention Deficit Disorder Resources
http://www.familyvillage.wisc.edu/lib_adhd.htm 

Heads Up!
What a find! This commercial site caters to the needs of special children. Look for products and information that covers a wide range of special needs from ADD to Homeschooling to Sensory issues.

How Many Kids are Really ADD/ADHD?
A newly published study released by Mayo Clinic indicates that approximately 7.5 per cent of our kids are truly ADD/ADHD. "The Mayo Clinic report, published in the March issue of "Archives of Pediatrics and Adolescent Medicine", addresses the confusion about the number of children affected by AD/HD."

"Hunters, Explorers, and Dreamers"
Charming and inspirational!  Kudos to "Born to Explore-The Other Side of ADD" by Web creator, Teresa Gallager.

Just for Kids
A delightful site that is devoted to helping kids understand ADD. From the Web pages of ADDA. 

New IDEA Regulations-ADD/ADHD
"A new era in the history of AD/HD began today with the release of federal regulations offering unprecedented recognition of the educational needs of students with AD/HD." From C.H.A.D.D. 

Ritalin May Cause Long-Lasting Changes
The University at Buffalo researchers have released a new study that indicates that Ritalin may cause long lasting effects in brain cell function.

The Positive Side
Uplifting quotes and more to boost our children's self-esteem. From the terrific Web pages of "Born to Explore-The Other Side of ADD".

Teen Area
An Internet site where teens can learn about ADD/ADHD or just chill. Presented by ADDA, which is truly an exceptional site.

Typical ADD Symptoms
Attention Deficit Disorder has characteristics that are easily recognized. Williams-Diagnostic offers viewers a simple checklist.

The National Alliance for the Mentally Ill (NAMI) is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such  as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders.
 

Attention deficit/hyperactivity disorder (ADHD): ADHD is a diagnosis applied to children and adults who consistently display certain characteristic behaviors over a period of time. The most common behaviors fall into three categories: inattention, hyperactivity, and impulsivity. The most commonly diagnosed behavior disorder in young persons, ADHD affects an estimated three percent to five percent of school-age children.

LD In Depth offers a vast array of information on topics within the area of learning disabilities. Here you'll find articles written by the leading experts, research findings reported by top researchers, and the latest news in the field of learning disabilities http://www.ldonline.org/

ABCs of LD/ADD-The ABC's of LD and ADD

First PersonFirst Person offers personal essays on first-hand experiences with the challenges of learning disabilities. Essays authored by teachers, parents and students offer advice and insight to living with learning disabilities.

LD Store Here's the place to buy the best materials on learning disabilities and related topics. Within each topic area, you'll find information on books, videos, audio tapes, and other resources.

For Teachers

What is ADHD? This is basic information about ADHD.

What is ADHD? Is It a Type of LD? - Dr. Larry Silver January 2002.

Attention Deficit/Hyperactivity Disorder - Decade of the Brain, Information Booklet, National Institute of Mental Health, National Institutes of Health, September 1993 - This 42 page booklet offers parents and teachers information on ADHD.

Attention Deficit/Hyperactivity Disorder, Mary Fowler, NICHCY Briefing Paper, October 1994 - This Briefing Paper helps parents and educators learn what ADD is, what to look for, and what to do. This paper focuses on how ADD affects children and youth.

Attention Deficit Disorder: Adding Up the Facts, U.S. Department of Education, 1994 - This article is an informative introduction to ADD-ADHD. It is straightforward, easy to follow and includes some of the most frequently asked questions.

Attention Deficit Disorder: Beyond the Myths, U.S. Department of Education, 1994 - This short article dispels some of the most common myths about ADD.

Understanding and Identifying Children with ADHD: First Steps to Effective Intervention, Appalachia Educational Laboratory - An overview of AHDH, including its diagnosis and treatment.

How is ADHD diagnosed?

The Key Components of a Comprehensive Assessment of AD/HD , The Chadd Information and Resource Guide to AD/HD, 2000, article by Arthur Anastopoulos, Ph.D, E. Paige Temple, and Ericka E. Klinge. This article reviews the cornerstones of an AD/HD evaluation.

How is a child with ADHD helped?

Ritalin: Not the First - or Only- Choice for Active Children with Academic and Social Problems, Dr. Jo Reed, Virginia Commonwealth University, 1996 - This article offers a warning to educators regarding the complexity of diagnosing ADD/ADHD.

10 Things I Wish Every Student Knew about Medications, Patricia Quinn,Association on Higher Education And Disability. What to know before you go!

ADHD and the Classroom:

The Educational Implications of ADD/ADHD, Roberta Weaver, Ed.D and Mary F. Landers, Ed.D (1998) This informative article explores educational responsibilities, models of intervention, and strategies.

ADHD and Children Who Are Gifted, ERIC Digest #522, 1993 - This fact sheet summarizes for parents and teachers information on children who have an attention deficit disorder with hyperactivity (ADHD), are gifted, or are both ADHD and gifted.

Checklists for Teachers, Sandra Rief - This renowned ADHD expert offers guidance on getting, focusing, and maintaining students' attention in the classroom, plus keeping students on-task during seat work.

Targeting Home-School Collaboration for Students with ADHD, Teaching Exceptional Children, July/August 1999 - This article is packed with good ideas on how to facilitate collaboration and communication between home and school to enhance the learning of students with ADHD.

Teaching Children with Attention Deficit/Hyperactivity Disorder, ERIC Digest #569, 1998 - Lots of helpful tips on instructing students with ADHD.

Dual Exceptionalities, ERIC Digest #574, 1999 - An examination of the characteristics of gifted students with disabling conditions, including ADHD.

ADHD--Building Academic Success, Appalachia Educational Laboratory - This brief examines how the mismatch between school environments and children with ADHD contributes to school failure, and reviews suggested changes in policy and practice that can help schools become places of growth and development for all students, including those with ADHD.

Attention Deficit Disorder: What Teachers Should Know, U.S. Department of Education, 1994 - This article is a good source of information for all teachers. It describes ways in which teachers can work with ADD students effectively.

Why is High School So ADD Unfriendly, and What Can You Do About It?, Dr. Kathleen Nadeau, 1998 - Tips about making the best of high school.

Accommodations: Classroom and legal issues.

ADHD -- Legal Responsibilities for Schools, Appalachia Educational Laboratory, State Policy Program, 1994 - This article outlines school responsibilities to students with ADHD under the federal statues like IDEA, the ADA, and Section 504 and by state laws.

Developing 504 Classroom Accommodation Plans: A Collaborative Systematic Parent-Student-Teacher Approach, Bonita Blazer, Teaching Exceptional Children, 1999 - Offers a fresh approach to developing accommodation plans for students.


Parental Issues:


Attention Deficit Disorder: What Parents Should Know
, U.S. Department of Education, 1994 - A guide for parents about the challenges of raising an ADD child.

Questions to Ask When Selecting a Professional to Assess or Treat ADHD, Parents' Educational Resource Center - A useful listing of questions to help parents optimize relationships with professionals.

Fatherhood and AD/HD, Patrick J. Kilcarr, Ph.D and Patricia O. Quinn, M.D., Attention! Magazine Volume 4, Number 2 - Fall 1997 - Thoughful suggestions on creating a supportive relationship with a son with ADHD.

The Impact of ADHD on the Family and the Father's Relationship with his Child, Patrick J. Kilcarr, Ph.D., 1997 - Insight and direction from fathers who live with and help support their sons who have ADHD from the co-author of "Voices From Fatherhood: Fathers, Sons, and ADHD."

Coping with ADD - A Mother's Point of View, South Dakota Parent Connect - One mother's compilation of tips after years of parenting a child with ADD.

Attention Deficit Disorder in College: Faculty and Students, Partners in Education, (2001) From NCLLD, learn the legal rights of the college student with ADD and possible accommodations college can provide.

Attention and Deficit Disorders and Gifted Students: What Do We Really Know?, by Felice Kaufmann, M. Layne Kalbfleisch, and F. Xavier Castellanos, 2000. Summarizes what is known and what is assumed about ADHD in gifted students.

Talking to Your Children About Their Attention Deficit Disorder, The Chadd Information and Resource Guide to AD/HD, 2000, article by Judith Stern, M.A. and Uzi Ben-Ami, Ph.D. This article outlines why children should have straightforward information about their disabilities and offers tips on discussing the symptoms.


More Information:

William Farish: The World's Most Famous Lazy Teacher, taken from Thom Hartmann's Complete Guide to ADHD, 2000 looks at changes in education and how grades impact upon student learning.

AD/HD and Sleep Problems by Carolyn E. Hart, M.D. December 2001- AD/HD at all ages includes or co-exists with many types of sleep problems, and conversely, various sleep disorders can cause symptoms that imitate AD/HD, but really should be treated differently.

Preventing Antisocial Behavior in Disabled and At-Risk Students, Appalachia Educational Laboratory - This paper examines the research on these factors, especially in regard to Attention Deficit/Hyperactivity Disorder (ADHD) and learning disabilities (LD); presents a model that promotes prosocial behavior; and suggests considerations for preventive practice and policymaking.


ADHD Bulletin Boards:
Visit LD OnLine's bulletin boards to exchange your ideas and experiences:

. Parenting a Child with ADHD . Teaching Students with ADHD

.Adults with ADHD

Other resources:

Assessment-Assessing children for the presence of a learning disability is explored here, including the school and parent roles, terminology, and the requirements of federal law. An understanding of this process is essential for both parents and educators. We also look at the issue of large-scale assessment and its implications for students with learning disabilities

Behavior / Discipline

This section examines behavior and discipline issues, including important aspects of IDEA 97 such at Functional Assessment and Behavior Intervention Plans

Early Identification
Identifying learning disabilities early can pave the way for children to get the support they need to experience successful futures both in school and beyond. Understanding normal and atypical development will help in the identification process. Knowing the early warning signs that put young children at risk for learning disabilities is crucial for early diagnosis and intervention.

Family Relationships-

Here we explore the many facets of family life; the impact of a child with learning disabilities on the family, and the importance of familial support and understanding in the development of a child with special needs. Sibling relationships are also investigated.

Gifted/LD-The terminology in the fields of learning disabilities and special education can be baffling, at best! We've gathered these glossaries as handy references to help you survive in the world of LD.

Glossaries-

I.E.P.   Understanding the Individualized Education Program (I.E.P.) is

Legal & Legislative-

The rights of people with disabilities are protected by several federal statutes. Understanding these laws is essential to making the most of services. Articles presented here seek to inform parents, educators, and students of laws governing services as well as other legal issues.

LD In-General
Here we've gathered a wealth of articles, digests, and brochures on Learning Disabilities. After exploring these, move to other categories of LD In-Depth to gain comprehensive information on specific areas in the field of learning disabilities

Math Skills-Learning disabilities in the area of mathematics are explored here. Often referred to as dyscalculia, math-related learning disabilities are complex and require intervention by skillful teachers to help students achieve success. We've gathered informative articles and direction to the latest teaching research to provide understanding and assistance to both parents and educators.

Nonverbal LD

Parenting- a child with special needs is quite a challenge. Often, it means learning a whole new field, such as special education, diagnostic testing, and others, just so you can make informed decisions about your child. To help, we've gathered informative articles and useful forms to help you get organized, understand your rights and responsibilities, and provide support for your child at home and at school.

Processing Deficits-or disorders, are problems with the processes of recognizing and interpreting information taken in through the senses. Although there are many types of perception, the two most common areas of difficulty involved with learning disabilities are visual and auditory perception. Information offered here covers these two types of processing deficts, their educational implications, basis interventions and what to do if there is a suspected problem

Reading Here we take an in-depth look at dyslexia, a learning disability that is associated with reading difficulty. As the most prevalent of all learning disabilities, dyslexia has received much attention and research in the past decade, resulting in new information and understanding of reading disorders and offering great promise for the future.

Self-Esteem a critical ingredient for life-long happiness and success, is extremely fragile in students with learning difficulties. Here we explore this issue with articles for parents, students and educators.

Social Skills Weak, under- developed social skills can be the most devastating of all the characteristics of a child or adolescent with learning disabilities. Fortunately, here's some wonderful advice from experts in the field as well as articles to enhance the understanding of this critically important issue for parents and educators.

Special Education/ IDEA 97-This section examines several key issues involved in special education services as mandated under the Individuals with Disabilities Education Act (IDEA) as amended in 1997. Be sure to also learn about the laws and regulations that govern special education in your state.

Speech & Language

Summer Programs

Technology

Transition - movement from school to post-school activities - is crucial for life-long success of students with learning disabilities. Understanding the elements required for effective transition planning is the focus of this section

Writing can be a challenge for many learning disabled children. Often called dysgraphia, writing related learning disabilities are complex and require skillful intervention to help students achieve success. There is also information on teaching writing skills and using technology as a resource.

Have you just learned your child is struggling in school? Visit Schwablearning.org, a site on learning differences that offers parents basic, practical advice.

Postsecondary Help: Help for college students with LD and/or ADHD.

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