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
Clinic Visits-How To Prepare

INDEX Page

 
Parents can be prepared for doctor appointments be either having the following information on history pre-prepared for your child's medical records and to keep a journal of changes in symptoms based on the questions asked below. 
 
Prior to your child's next appointment with the physician, summarizes the changes since the last visit and fax them to the physician indicating that these are areas of concern you wish to discuss on your next visit (include your appointment date).
 
Most computers have a "fax" capability. Always ask physician's what their fax number is and include that in your child's records.  I've found that a doctor's office responds faster to fascimiles then phone calls plus you have a written list of the concerns you want to discuss.
 
In the Clinic

During the child's clinic visit, the physician inquires about the child's detailed history of the symptoms; other problems the child may have; which medications the child is taking; and whether there are other family members with the same problem.

The basic list of questions that every doctor seeks to answer is as follows...

  • Current complaint (CC): What is the major problem(s) affecting the child?

  • History of present illness (HPI): What are the symptoms? When did they start? How have they progressed, what makes them better or worse?

  • Past medical history (PMH): Does the child have any other medical problems? Have there been medical problems in the past? Which medications does the child take, and are there any known medication allergies?

  • Has the child been developing normally with good early milestones or school performance?

  • Family history (FH): Are there any other family members with similar symptoms, other neurological disorders, or other major medical disorders? Is there any particular trait that "runs in the family"? In some cases, the doctor will need to construct a complete family tree, indicating family members with any disorders.

  • Social history (SH): Where does the child live? Who is the primary caretaker? What school does the child attend?

  • Review of Systems (ROS): Are there any other ongoing problems? Is there any difficulty with feeding or growth? Has there been any decline in cognitive, memory, or language function?

Following this thorough history, the evaluating physician performs a general physical examination. This examination, which may include examining the back of the eyes, listening to the heart, feeling the liver, looking for birthmarks on the skin, and examining the limbs. In addition, a neurological examination, which involves testing the major functions of the brain, spinal cord, nerves, and muscles, is performed. The details of the examination differ depending on the child's age and particular symptoms. Not all tests are possible for all children. The most important aspect is to challenge the child to determine how much they can do and whether there are any limitations relative to other children of the same age.

  • Mental status examination:
    • Is the child awake, alert, and responsive?
    • Does the child behave in an appropriate manner?
    • Are speech, language, reading, and writing skills appropriate for the child's age?
    • Are spatial recognition and reasoning skills intact?
    • Is judgment intact?
    • Is memory for objects and numbers appropriate for the child's age?
    • Often a child's behavior in the doctor's office is very different from behavior at home or at school, so interpretation must be guided by the history as well.

  • Cranial nerve function:
    • Are eye, facial, mouth, and tongue movements intact?
    • Is sensation on the face normal?
    • Are hearing and balance functions intact?
    • Are smell and taste normal?

  • Sensation:
    • Is the child able to feel light touch, temperature, pinprick, and the position of joints throughout the body?
    • Is the sensation the same on both sides of the body and the same in the face, arms, and legs?

  • Motor function:
    • Is strength normal in all parts of the body?
    • Are there any areas of unusually reduced muscle bulk?
    • When relaxed, can the examiner move the limbs and neck easily?
    • Is there a change with the speed of movement or a "spastic catch"?
    • Is there a change when a distant part of the body is moved or when the child is lying down, seated, or standing?
    • Are there any abnormal postures of the limbs, trunk, or face?
    • Are there excess involuntary movements such as choreoathetosis, myoclonus, tremor, or tics?

  • Coordination:
    • Can the child reach accurately to touch an object far from their body?
    • Are movements appropriately rapid?
    • Can the child manipulate objects with two hands and pick up small objects between the fingers?
    • Can the child perform rapidly alternating movements such as opening and closing the hands or fingers?

  • Reflexes:
    • When a rubber hammer is used to tap the tendons, is there normal movement at the knees, ankles, and elbows?
    • Do the toes go upwards or downwards when the bottom of the foot is stroked with a metal object?
    • Are there any persistent neonatal-type reflexes including the asymmetric tonic neck reflex (arm extension or flexion when the head is turned) and Moro reflex (arm extension when startled)?

  • Gait:
    • How does the child support his or her weight against gravity?
    • How does the child respond to a loss of balance?
    • Can the child stand and walk stably (depending on the child's age)?
    • Is it possible to walk on the toes or heels, to walk on a narrow line, or to walk backwards?
    • Is the child unsteady while standing with eyes closed?
    • Is there any unusual posturing of the arms, legs, or face while walking or running?