Juvenile-HD
Hints For Weight Loss in HD

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SECTION 1 - AT RISK
Age & Probability Chart
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SECTION 2 - GENETIC TESTING
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SECTION 3 - JHD
Coping With The Early Years
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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
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Bradykinesia
Caring Tips
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Chorea
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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
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-Seizures ~Special Populations
Falling~Safety
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Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
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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
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Financial Planning
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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

 
Hints For Weight Loss in HD
Preventing Weight Loss in HD Patients
Susan Sandler, M.S

Overview
Susan Sandler, M.S., is a Registered Dietitian (R.D.) of Bateman Food

and Nutrition for Healthcare at Terence Cardinal Cooke Health
Care Center in New York, NY

Maintaining weight in HD patients has been shown to reduce some symptoms
and avert malnutrition. Identifying the need for more calories is critical to the patient's overall well being.
 
Weight loss can occur for four reasons:

-dysfunction in cell metabolism (how the cell burns energy)

-increased use of calories due to involuntary movements
 
-abnormal food- related behaviors which result from the
 cognitive and psychological changes that occur as the disease
 progresses, and 
 
-social factors, such as inadequate access to high-quality
  foods or lack of understanding of appropriate nutrition.
 
A diagnosis of HD dictates achieving adequate body weight as soon as is
feasible. In HD, adequate weight is a protective 10-20 pounds above ideal
weight.

Food problems may be a result of psychological manifestations, emotional
changes, depression, obsessive compulsive disorder or a shortened attention span that renders the patient unable to sit at the table long enough to eat.

Medications may address the underlying psychological causes, but may also
have side effects that themselves cause loss of appetite, dysphagia or constipation and should be reviewed regularly with the doctor.

Detecting the need for more calories or more liquids involves three steps

Suggestion

Directions: What to do

Any consistent loss of weight should be met with an increase in calories.

An increase in random movements (rate, frequency or duration) also indicates a need for more calories.

In a person with HD, weight can drop so quickly that additional increments
of 500 to 1,000 calories a day may be required.

Declining weight or food Intake is a red flag for a change in menu, texture
or independence in eating.

Weight can be increased by adding calories to well tolerated foods and by
accommodating food preferences. 

  • Respect food requests and serve historically favorite food
     
  • Observe plate waste and order of consumption to
        identify favorite foods
     
  • Watch facial expressions to Identify preferences
     
  • Serve favorite flavors, such as a sauce or seasoning,
        on multiple foods
     
  • Serve food so that it is comfortably warmer or cooler
        than the inside of the mouth
     
  • Alter texture of preferred foods to reduce coughing
        or gagging
     
  • Serve food that holds its shape in the mouth
     
  • Form altered texture food into shapes such as croquettes,
        patties or pancakes
     
    LOOK AT THE PATIENT
     
    Weight low is visible and measurable. Dehydration has telltale signs.
    To avoid these problem:
     
     Weigh patients weekly on the same scale in the same clothes

     Note changes in the way clothing fits

     Check for dry and scaly skin (dehydration)

     Watch for dark or limited urine and constipation (dehydration)


    LISTEN TO THE PATIENT

    Watch for complaints/expressions of hunger and thirst, including:

      Indications of emptiness, discomfort or hunger
         despite adequate food intake

      Diarrhea

      Scraping an empty plate or opening mouth to be fed

      Increased agitation

    WATCH WHAT/HOW THE PATIENT EATS   

    Behavioral changes that limit food intake are among the most common reasons for weight loss.

     Refusing to eat/Skipping meals

     Refusing particular foods or textures

     Irrational food cravings/Aversions

     Preference for one or two foods only

     Demand for regular texture food despite risk of choking

     Self-isolation/Sleeping through meals

     Staring at food/Playing with food
     
    Taken from  HDSA's "The Marker" click here August 2000