Juvenile-HD

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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
Coping With The Early Years
COPING WITH THE EARLY YEARS
CHILDREN WITH SPECIAL NEEDS
OBSERVATIONS OF A SOCIAL WORKER

By Karen Graziano, CSW

The loss of the idealized perfect child can impart a depth of feelings upon
families that is often unknown to others.  The shattering of a dream, of
hopes needing to be redefined, a complicated pregnancy or delivery, genetic
mishap or tragic accident which escorts parents into a netherworld of
confusion, denial, self-sacrifice, exhaustion, notwithstanding feats of courage. 
 
How individuals embrace these feelings can set the tone for the future both
on a personal and ultimately, a societal level.  Optimally, one outcome may be
acceptance; of oneself; of others and acceptance of fortune.
 
As within the grieving process, there are transitions individuals, parents and
other caregivers may experience:
  • Why Me Many people feel as though they have done
    something wrong and are being punished for an unknown
    deed.  They feel that they have either been chosen to
    grieve or have been blessed as a special person,
    dependent upon whichever take is assumed.
  • Its All Your Fault - Any extremely stressful situation
    increases tension in the marital and familial relationship. 
    This is common.  Many parents tend to affix blame on
    the partner alluding to the fact that it is in the genes,
    social make-up or has to do with why the sky is blue.
    People sometimes feel better if the unknown can be
    explained, and they often struggle to feel better.
  • To Be Or Not To Be - Some parents cope by sacrificing
    themselves, siblings, extended family members and/or
    friends, for the sake of the member most in need. Perhaps,
    this cannot always be avoided by caring parents. However,
    it seems that often in these circumstances and emotional
    expressions that guilt and a myriad of deep feelings are at
    play.
Shop Till You Drop
There is always a quick fix, in our society, is there not? Some parents
will resort to doctor shopping. However, a distinction can be drawn. It
seems that to visit many doctors in seeking a magic cure, harboring
unrealistic goals might qualify. Parents seeking wisdom, skill and an
understanding benevolence would seem rather, to be informed consumers
of specialized medical care.

Inclusion
More transitions unfold.  Many efforts on behalf of children with special
needs have yielded a wave of growth for our societies as we witness
inclusion within the community, whether it be in school, housing, or the
warm smile of a stranger as opposed to that often encountered blank
stare.  If we apply this to the family, we see an adjustment where each
members needs are addressed in the context of equality. 
 
The Healing Process
It makes me think of the childhood game, Pin the Tail on the Donkey. 
When the blindfold is removed, everything becomes clear.  But it is not
that easy, as parents find inner resources to call upon, attempt to gain
some control, establish a more meaningful and supportive relationship
with their child, attempt to deal with the world they have been thrust into,
while maintaining a modicum of their lifestyle. 
 
It helps to relate to others in similar circumstances as isolation, although
common, is often stultifying.  It is also important to practice what I refer
to as advised conscious awareness, or to soul search, learn from others,
and work through feelings.  That energy may be channeled into other
constructive outlets: The birthing of a true advocate, perhaps.
 
How does one cope with the engendering of anger, sadness, grief,
or pain and yet still abound with love? 
 
It is a journey of the mind, body and spirit.  Time does eventually heal. 
Reaching out to others, whether it be to friends, family and/or agencies
can help.  Support services are available for parents and children to do
just what the term states; offer a bolstering, an anchor, when needed. 
 
A social worker is the appropriate professional to help negotiate this
complicated mire.  Whether it be counseling, accessing entitlement programs,
equipment needs, or just a knowing heart, a social worker can help you pull
it all together.
 
As parents work through the strong feelings brought about by an unexpected
stroke of fate, I would like to leave you with a quote from William Wordsworth
 
though nothing can bring back the hour
of splendor in the grass, of glory in the flower,
we will grieve not, rather find strength in
what remains behind 
 
It is your courage and no one can take it away.
 
Karen Graziano, CSW is a social worker with the
Long Term Home Health Care Program at
St. Marys Hospital for Children. You can contact her at
St. Marys Hospital for Children,
Long Term Home Health Care Program,
29-01 216th Street, Bayside, New York 11360