Family Dynamic Alterations in HD


What Is Huntington's?
Facing HD~Family Handbook
SECTION 1 - At Risk
At Risk For HD-What Next?
Testing Children
~~Chapter 1 JHD Handbook
Best Interest of Child?
Crystal Ball?
Parent Hasn't Tested?
Food For Thought
Age & Probability Chart
SECTION 2 - Genetic Testing
At-Risk Checklist
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
Related Resources
Age of HD Appearance
Children of Parents With HD
Child~Parent Ill
Clinical Description
Family Dynamic Alterations in HD
What Kids Are Saying-HD
~~HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
Resources on JHD
SECTION 4 - Symptoms
~Helpful Resources
Physician's Guide To HD
~HD Westphal Variant
Activities of Daily Living
8 Fears of A Chronic Illness
Anxiety, Fears & Phobias
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Communication Problems
~Related Resources
Dehydration-Physician's Guide
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
~Related Resources
Dystonia/Rigidity~Physician's Guide
Epileptic Seizures and Epilepsy
GERD (Stomach)
HD Principle Treatments
Insomia ~Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Speech & Swallowing
Swallowing & Nuitrition
5 Swallowing Problems
Swallowing Warning Signs
Why Certain Symptoms Occur
SECTION 5 - Therapies
Finding a Therapist - Behavoir
Speech-Language Therapy
Related Resources
SECTION 6 - Medications
Medications-Movement Disorders
~HD Treatments
Adolescents Under 25
Antidepressant Adverse Effects
Anti-psychotic Medications
Psychiatric ~ Children
SSRI Medications
Drug Resources
SECTION 7 - Surgery
Surgery-Movement Disorders
Related Resource
SECTION 8 - Procedures
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
Related Resources
SECTION 9 - 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 10 - Suicide
Straight Talk On Suicide
Teen Suicide-You Need To Know
SECTION 11 - Divorce
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 12 - Disabilities
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
~Related Resources
Financial Planning
Finding A Special Needs Camp
Special Needs Camp
SECTION 13 - Assisstive Help
Child Assistive Technology
SECTION 14 - Emotional
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
Related Resources
SECTION 15 - Grief
Helping Child Deal With Death
ADD/ADHD Research Articles
ADD & Teens
Conduct Disorders
Understanding AD/HD
What Is AD/HD?
~Additional Resources
SECTION 17 - Support
HD Support Groups
National Youth Association
SECTION 18 - Links
HD Links
Helpful Forms-Info
Related Resources
Tips For Friends
SECTION 19 - Benefits
HD Disability
Section 20 - My Experiences
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart


Taken from the Behavioral Problems in Huntington's disease written by Dr. Richard Dubinsky

Family Dynamic Alterations

The tradition roles in the family involve the parents that provide leadership, nurturing, care, comfort and necessities and that of the child that must rely on the parent to provide these items. As we grow and mature the child takes on the roles of the parent as they become more independent. Eventually the child becomes a parent in their own right. They then have children of their own to take care of and also their parents may also require help as the grandparents now need assistance.

When a member of a family is ill, these roles can rapidly shift. While a child who is ill still remains a child, their level of independence diminishes. When the parent is ill, the child will need to take on adult roles while the ill adult becomes more child like in their need to be cared for. If the illness is short lived, the roles will be reestablished rapidly. If the illness is life long, as is Huntington's disease, once a person is symptomatic, the roles may never be restored.

When the parent is ill When a parent is ill and is no longer able to care for their child (children) the child's reactions may be:

  • care for the parent
  • become more independent
  • turn to others for leadership, nurturing
  • act out in order to get more attention

Some of the results of the parent's illness may be:

  • neglect of the children
  • require the child to do household chores:
  • cleaning the house
  • meal preparation
  • laundry
  • abuse, neglect

When these problems become so severe that the family has trouble adapting, then counseling is needed. Counseling sessions can help to teach family members techniques to deal or work with the problems. Oftentimes only one or two sessions are needed in order to get the family working smoothly again.

Another excellent source of support can be found from other families with Huntington's disease.