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
Finding a Therapist - Behavoir

INDEX Page

Lately, your child has been extremely irritable and sad, even when playing
with friends and favorite toys. Other parents you know have suggested
that it may be "a stage," but your child's behaviors and emotions aren't
improving and your gut tells you that something is wrong.
 
What can you do to help?
 
The most important steps to take are to recognize that it may be an emotional
or behavioral problem your child is having and to intervene as quickly as
possible. In many cases, finding a good therapist will be key in recognizing the
problem and in treating it effectively.
 
Should My Child See a Therapist?
 
If you've asked your child about what's bothering her and she's reluctant to
express herself, a therapist can often bridge the communication gap. Child
and family psychologists are specifically trained to work with young children
and adolescents, helping even the most timid to open up and share feelings.
 
On the other hand, maybe your child has shared her feelings with you, but
you're not sure how best to handle a particular problem or situation. Or,
maybe you and your child haven't been getting along lately, and heated
arguments or disagreements have replaced the usual dinnertime chatter.
In all of these situations, a therapist can offer an objective view and a variety
of solutions that may be useful for your family.
 
Your child's doctor should examine your child if you have any concerns that he
may be depressed or experiencing other emotional problems. Your child's doctor
will perform a complete physical exam and may order tests to evaluate whether
a medical problem could be contributing to your child's symptoms.
 
According to Francine M. Roberts, PsyD, RN, and author of The Therapy
Sourcebook, children who are not yet school-age could benefit from seeing a
therapist if there is a significant delay in achieving developmental milestones
such as walking, language development, and toilet teaching.
 
In older children, the best indicator of emotional difficulty may be their school
functioning. Behavior that may be tolerated within a family is sometimes
recognized as inappropriate when the child enters a school setting, according
to Roberts.
 
Although what's considered normal or acceptable behavior can vary a great
deal depending upon your child's age and level of maturity, some of the signs
that your child may be experiencing stress include:
  • developmental delay in speech, language, or toilet teaching
  • behavioral problems (such as excessive anger, acting out, or eating disorders)
  • a significant drop in grades, particularly if your child normally maintains high grades
  • episodes of sadness or depression
  • social withdrawal or isolation
  • decreased interest in previously enjoyed activities
  • overly aggressive behavior (such as biting, kicking, or hitting)
  • sudden changes in appetite (particularly in adolescents)
  • insomnia or increased sleepiness
  • excessive school absenteeism or tardiness
  • mood swings (extremely happy 1 minute, crying the next)
  • development of or an increase in physical complaints
    (such as headache, stomachache, or not feeling well)
    despite a normal physical exam by your child's doctor
It's also helpful to speak to caregivers and teachers who interact with your
child on a regular basis. Is your child paying attention in class and turning
in assignments on time? What's her behavior like at recess? Gather as much
information as possible to determine the best course of action for your child.
 
Finding the Right Therapist
 
You've determined that your child would benefit from seeing a therapist, but
how do you find a qualified clinician who has experience working with children
and adolescents? The therapist's experience and education is important, but
you must also find a counselor with whom your child feels comfortable.
 
A good starting point is getting a referral from your child's doctor. Most doctors
have working relationships with mental health specialists such as child therapists.
The right therapist-patient match is critical in a therapeutic relationship, so you
may need to meet with a few before you find one who clicks with your child.
 
You can also ask friends, colleagues, or family members for referrals - word of
mouth is often a good way to get helpful information.
 
As with other medical professionals, therapists may have a variety of credentials
and specific degrees. As a general rule, your child's therapist should hold a
professional degree in the field of mental health (psychology, social work, or
psychiatry) and be licensed by your state. Psychologists, social workers, and
psychiatrists all diagnose and treat mental health disorders.
 
Although experience working with young patients is beneficial, it's also wise to
know what those letters that follow a therapist's name mean.
 
Psychiatrists (MD or DO)
Psychiatrists are medical doctors who have advanced training and experience
in psychotherapy and pharmacology. They are the only mental health providers
who can prescribe medications.
 
Clinical Psychologists (PhD, PsyD, EdD, or DSW)
Clinical psychologists are therapists who have a doctorate degree that includes
advanced training in the practice of psychology, and many specialize in treating
children and adolescents and their families.
 
Clinical Social Workers (LCSW, ACSW, LICSW, or CSW)
A licensed clinical social worker has a master's degree and specializes in clinical
social work. An LCSW (licensed clinical social worker) is licensed in the state in
which she practices. Accredited clinical social workers (ACSW) may also be
accredited to work in more than one state. An LICSW is a licensed clinical social
worker, which is a similar accreditation to the ACSW, which means that these
social workers can work in any state. A CSW is a clinical social worker who is
not yet licensed to practice. It's important to note that credential requirements
vary by state.
 
Types of Therapy
 
There are many types of psychotherapy. Therapists choose the strategies that
are most appropriate for a particular problem and a particular child and family.
Therapists will often spend a portion of each session with the parents alone, with
the child alone, and with the family together.
 
Any one therapist may use a variety of strategies, including:
 
Relaxation Training
This strategy focuses on teaching children how to relax their minds and bodies.
Relaxation training helps children learn to cope with stresses and maintain their
daily activities. With this approach, children are encouraged to take responsibility
for their own care, which can make them feel more in control of their situation.
 
Stress Management
If stress seems to trigger or worsen your child's condition, this type of therapy
may help him learn ways to recognize stress and how to deal with it.
 
Cognitive Behavioral Therapy
This type of therapy is often helpful with children 12 years and older and with
children and adolescents who are depressed, anxious, or having problems
coping with stress. Cognitive behavioral therapy attempts to identify maladaptive
ways of thinking. For example, a child may fear test taking because he thinks,
"Even if I do my best, I will fail." This type of therapy restructures negative
thoughts into more positive, effective ways of thinking.
 
Individual Therapy
This type of therapy involves having a therapist work one-on-one with a child
to focus on areas of need such as depression, social difficulties, or worry.
 
Family Therapy
Family therapy can be helpful in many cases, such as when family members
are having problems getting along and disagree or argue often, or when a
child or adolescent is exhibiting behavior problems. Family therapy involves
counseling sessions with some or all family members, helping to improve
communication skills among them. Treatment focuses on problem-solving
techniques and can help parents reestablish their role as authority figures.
The benefit of family therapy is that the therapist can determine if family
difficulties contribute to your child's problem and how to address that dynamic.
 
How Should I Evaluate a Prospective Therapist?
 
There are a number of factors to consider when searching for the right
therapist for your child, but a good first step is to ask a therapist if he or
she is willing to meet with you for a brief consultation or to talk with you
during a phone interview before you commit to regular visits. However,
not all therapists are able to do this given their busy schedules. Most
therapists charge a fee for this type of service; others consider it a
complimentary visit.
 
Consider the following factors when evaluating a potential therapist:
  • Is the therapist licensed to practice in your state?
  • Is the therapist covered by your health insurance plan's mental
    health benefits? If so, how many sessions are covered by your
    plan? What will your co-pay be?
  • What are his or her credentials?
  • What type of experience does the therapist have?
  • Has the therapist worked with children and adolescents a great deal?
  • Would your child find the therapist friendly?
  • What is the cancellation policy if you are unable to keep your appointment?
  • Is the therapist available by phone during an emergency?
  • Who will be available to your child during the therapist's
    vacation or illness or during off-hours?
  • In what types of therapy does the therapist specialize?
  • Is the therapist willing to meet with you, in addition
    to working with your child?
As you can see, there are a number of issues to consider when seeking the best
therapist for your child. Don't rush the selection process, and be sure to take
notes when interviewing each candidate.
 
How Will a Therapist Help My Child?
 
Therapists can help your child handle a variety of emotional problems. Many
children need help in coping with school stress, such as homework, test anxiety,
or peer pressure. Others may need help in discussing their feelings about
family members, particularly if the family is undergoing a major transition, such
 
A reputable therapist can also help your child cope with the following
psychological concerns:
  • depression
  • learning disabilities
  • developmental disabilities
  • anxiety or phobias
  • life changes
  • eating disorders
  • attachment disorders
  • self-esteem issues
  • stress
  • anger
  • chronic illnesses or conditions, such as diabetes
In addition, research suggests that therapy helps children to have higher
self-esteem and better problem-solving skills as adults. Therapy can also
help your child understand the value of asking others for help.
 
Before the First Visit
 
You may be concerned that your child will become angry or sad when she's
told of an upcoming visit with a therapist. Although this is sometimes the
case, it's essential to be honest and forthcoming with your child about the
session and why she (or your family) will be going to a therapist. The truth
will come out once the session has begun, but it's important that your child
hear this from you rather than discover it on her own.
 
Young children can be reassured that a visit to a therapist does not involve
a physical exam and that no shots will be given. It's helpful to emphasize
that this type of professional talks and plays with children and families to
help them solve problems and feel better. Children may also be reassured
to learn that the therapist will be helping the parents or other family
members, too.
 
Older children and adolescents can be reassured that anything they say to
the therapist is confidential and cannot be shared with anyone (other doctors
and parents included) without their permission - unless they indicate that
are considering hurting or killing themselves or someone else.
 
Giving your child this kind of information beforehand about the therapy sessions
can help set the tone that your family will be working together.
 
How Can I Help My Child?
 
You can help your child to deal with emotional issues by listening in a caring,
nonjudgmental manner. Willingness on your part, patience, and a trusting
relationship are the main requirements when helping your child cope during
a difficult time. Children need their parents to listen to them through positive
times as well as challenging ones, and patience is critical as many young
children are unable to verbalize their fears and emotions.
 
It may be helpful to set aside a specific time to discuss your child's worries or
concerns. During this time, turn off the TV and let the answering machine
record your phone messages. This will let your child know that she is your
first priority.
 
Listed below are more guidelines that may help you to foster open communication
and problem solving within your family.
  • Talk openly and frequently with your child and let him know that you care.
  • Set a positive example for your child by taking care
    of your own physical and emotional needs.
  • Enlist the support of your partner, immediate family
    members, your child's doctor, and teachers.
  • Join a support group for parents.
  • Improve communication by having regular family meetings.
  • Set limits on inappropriate or problematic behaviors.
    Ask your child's therapist for some strategies to
    encourage your child's cooperation.
  • Communicate frequently with your child's therapist.
  • Be open to hearing all types of feedback from your child and from her therapist.
  • Spend time with your child and participate in her favorite activities or hobbies.
Remember that early intervention and recognition of a problem will help
you get the best care for your child's emotional problems.
 
Source: 
KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to
improving the health and spirit of children. Today, as part of its continuing mission, the
Foundation supports the operation of a number of renowned children's health facilities throughout
the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the
Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more
about them and its health facilities for children http://www.nemours.org/no/