Juvenile-HD
At Risk For HD-What Next?

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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

INDEX Page

 
This article in Word for printing Child's At Risk-What Next? 
This article will be updated to include some valuable comments I received from
Dr. Martha Nance. 
Your Child Is At Risk For HD-What Next?
Written by Jean E. Miller
 
Every child of a parent with Huntington's Disease has a 50% chance of inheriting
the disease AND a 50% chance of NOT inheriting the disease.  It is hoped this
article provides some information and thoughts for parents to consider before
seeking to have your child test for HD.
 
WORRY OVER SYMPTOMS
 
Almost every parent who writes me, whose children are at risk for HD or Juvenile HD, feel a child may be showing symptoms of the disease and they want to know how to get that child (or all their children) tested.   This is especially true in families who were not aware of Huntington's Disease being in their family until recently.   All of a sudden each child's every move, mood, lack of attention or problems in school, etc. is thought to be the "dragon" Huntington's.
 
JHD SYMPTOMS
 
The following was written by Dr. Martha Nance,  an expert in JHD in the US:

Many physicians are slow to suspect or diagnose juvenile-onset HD. The US HD Genetic Testing Group found that several factors were characteristic of juvenile HD:
  • An affected father
  • Drooling or changes in speech or swallowing
  • Seizures
  • Severe behavior problems
  • Rigidity (stiffness)
  • Chorea (very uncommon in young children,but may be present in teenagers)   
While a child with Juvenile HD may not exhibit every symptom, the more symptoms shown, the more likely that the child has the condition.   A gene test will confirm that the HD gene is present, but it cannot predict the time of symptom onset nor can it prove the symptoms are caused by HD.
 
GENETIC GUIDELINES IN TESTING MINORS
 
The US HD Genetic Testing Guidelines will not test anyone under the age of 18 unless that child is clearly showing symptoms of HD and treatment for those symptoms would help improve their quality of life.
 
American Academy of Pediatrics (AAP) policy also recommends that genetic testing for adult-onset conditions (such as Huntington's Disease) should be deferred until adulthood, or until an adolescent can decide for him or herself.

The Huntington's Disease of America's Genetic Testing for HD (ref3) states:
  • Testing of children (those under 18 years of age) is strongly discouraged. 
    If a child is exhibiting symptoms of HD, a neurologist who is familiar with
    HD should be consulted.
  • Genetic testing may then be recommended as a confirmatory measure in some cases.
  • Given that each person should decide for him or herself whether or not
    to be tested, minors should wait until they can arrive at this decision
    for themselves. 
  • Testing of children may also expose them to discrimination by health
    insurance companies, employers, and perhaps (consciously or
    unconsciously) by their parents.
QUESTIONS A PARENT NEED TO ASK
 
It is understood how any parent would be concerned.   Every parent with a
child at risk for HD naturally looks for any signs that their child might have
this disease and, seeing possible signs, want to take every precaution to
make sure that their child gets the BEST care available, if they do have HD.
 
But a question a parent must ask themselves is  "If  you found out your child
had HD would you be able to treat them normally?"....as if they  didn't have HD?
 
There is an information pamphlet from the Huntington's Lay Organizations
concerning predictive  molecular genetic testing (Ref.2)  where it suggests a
parent ask themselves the following when thinking about testing a child:
Do I need the test results to be a better father or mother to my children?
  • What legacy did I give my children?
  • Do I feel guilty with regard to my children and hope to
    reduce this guilt by obtaining a negative test result?
  • How will my relationship with my children change after
    being confronted with a positive test result that implies
    a 50% at-risk status for them?
  • When and how will I inform my children?
  • How will I express to them my psychological trepidation's
    during  the test phase?
  • Do I feel obliged to my children or feel pressured by
    them to clarify my gene status?

In an article on the Psychological impact of genetic testing for Huntington's
disease (Ref3) it shows where partners of someone testing for HD have
had psychological distress from anywhere from 1 week to 3 years after the
testing.  For most, it is not easy to hide this distress from others.
 
Learning your child has HD is very devastating news, something that would
be very difficult for you to keep hidden from that child.  It would only be natural
for you to become overly protective and precautious in how that child is
treated both at home and in school.
 
Your reaction to this knowledge would be very difficult to hide from any child
and eventually they would question your behavior.   Would you be prepared
to answer their  questions, to be the one to tell them they have Huntington's
Disease when they still have their childhood ahead of them to explore, grow
and enjoy?
 
WHAT TO TELL YOU CHILDREN
 
Children, depending on their age, will have questions about their parent or
relative who does have HD.  Most literature tells us not to give the children
more information then they need to know, or ask for,  while at the same time
making sure the children feel there is no secrecy or shame in  talking about
their  feelings or about HD.
 
In a paper by Toni Mansfield, adapted from a presentation by Donna Palumbo 
at the 1997 HDSA National Convention, she discusses how to talk to Children
of Parents With Huntington's Disease.(Ref1)

        As a child "gets older, the parent will have to discuss the hereditary
        nature of the disease and that the child does have a 50% chance of
        carrying the gene.  Honesty here avoids the possibility of your child
        suffering secretly.


 
Understanding HD, every child will naturally want to know if they will get
the disease and what their parents having the disease will mean to their
life. These things can place an enormous burden on a child.

The above article indicates a child may have:
 
"Emotional reactions may include denial, guilt,  grief, anger, shame,and hope.
All of these are normal responses to the stress HD piles on their lives. 
Problems occur when a  child experiences any of them over a prolonged period
and has no outlet to address their concerns. If any negative behaviors persist,
the  family should seek professional help."
 
OTHER THINGS TO CONSIDER
 
Other things to consider before having your child tested for HD is whether
or not you have adequate health insurance, long-term care and life insurance
in  place in case the child did test positive for HD.   With a parent already
diagnosed with HD it is probably already difficult for obtain insurance for the
children of the affected person.  But these things should be considered and
looked into before testing an at-risk child.
 
SUMMARY
 
Having lost my only child, Kelly, to Juvenile Huntington's Disease, I fully understand the fears, frustrations and sometimes out and out panic in every parent who has a child at-risk.  I am an advocate of testing minors, when one parent is HD positive  and  the child is exhibiting symptoms which is affecting their quality of life.
 
It's never too early to become educated and aware of the special considerations
that need to be known in caring for a child with Huntington's Disease.   However
I sincerely hope that parents would ask themselves some of the questioned posed above and to give testing of a minor serious consideration prior to seeking a genetic test for their child.
 
There are several good resources for families with a child with Juvenile Huntington's Disease. If your child is at risk you may want to consider reading those to educate yourself on the symptoms of JHD and other pertinent information.
 
There are also several articles on how to talk with children about their risks for HD (see below) and a booklet "Huntington's and Me-A Guide For Young People" published by the  Huntington's Disease Association (Wellington) Inc. that provides very powerful insight on what it is like for a young person to live in a family with HD.  This book is good for both parents and young people to read.
 
If your child is not showing symptoms, or having difficulty at home or at school, I would urge you to enjoy each and every second with your child and put off genetic testing until symptoms are clearly showing, which I pray they never will.  In the interim, discuss you concerns with your family physician and/or neurologist and keep a log of all suspicions you may have in order to discuss them later.

Love,
Jean E. Miller
Clearwater, Fl.

jemiller@tampabay.rr.com


RESOURCES - See HD links this website

REFERENCES

Genetic Testing for Huntington's Disease
See article elsewhere on this website

1. Children of Parents With Huntington's Disease
See article elsewhere on this website

2.  Information pamphlet from the Huntington's Lay Organizations concerning  
predictive molecular genetic testing
http://www.huntington-assoc.com/thought.htm


3. Psychological impact of genetic testing for Huntington's disease
See article elsewhere on this website