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
Bed/Pressure Sores

INDEX Page

This is a very painful topic for me as pressure sores was the very worst thing I had to deal with in HD.  Even with the best of care and treatment, they can become horrendous for someone who is bedridden and not getting proper nutrition.  Anyone's body will eventually breakdown if intervention and action isn't immediately taken.   Even then, I was told, sometimes the best they can do is to keep the wound from further breaking down.

If your loved one's skin is starting to breakdown, please demand that their primary care physician or Hospice get a wound care specialist involved right away!  And don't let them get away with just sending someone just once!!  Nurses are good but they are not up to date on the current treatment for pressure ulcers.  It wasn't until I practically had a nervous breakdown, and someone from the list suggested a wound care specialist, that I finally got hospice to have our doctor recommend one.

Be there when the specialist comes.  They will examine the wounds and give the nurses instructions, indicating when the wound should be relooked, how often, etc.  When this was said to us I said "so, you'll be back March xx right?"  They all looked at each other and the specialist said she was only approved for one visit.  I then asked "why, because Kelly has a terminal illness?  If it were any other patient would you be involved in their care?" and she answered yes.  I then told our hospice to get the doctor's to approve her coming on a regular basis, based on suggestions on what was considered "normal" intervention or I wanted Kelly hospitalized in a wound care facility where she would get the treatment she needed.   The wound care nurse was approved.  You have got to INSIST on them being approved to continue monitoring the wound.

Since Kelly died there are some new wound care products that have hit the industry. This will probably be one of the most critical care things you can do for anyone in late stage Huntington's Disease besides nutrition.  Please INSIST on the best wound care they have available.

Jean
===============================================

Bed Sores
"What are bed sores and can I do anything to prevent them?"

When you are very sick, you are prone to have skin breakdown wherever the weight of your body presses into the bed. You are at greatest risk if you move very little or you are in bed or in a chair for a long time, especially if you also have been losing weight. Ordinary pressure on the skin as you sit or move across sheets may be enough to tear or breakdown your skin. It is worth a great deal of effort to keep skin well-protected; skin breakdown is uncomfortable, a major indignity, and costly.

Protecting Your Skin

Change position at least every two hours. If you are in bed and comfortable in most positions, it is good to lie on one side, then your back, then the other side. Have a skilled nurse show your family members how to help you shift positions comfortably.

Use pillows to protect the common pressure points, which are under the heels and elbows and between the knees.
(NOTE:  The skin care specialists advised us that the use of pillows or like devices are good before any skin breakdown HOWEVER once the skin has started to break down these can cause further damage as the pillow itself can apply pressure from the weight of the body part you are trying to protect/Jean.)

Apply gentle massage with moisturizing lotion or cream to the back, arms, ears, hands, legs, and feet.

If you are at great risk for skin breakdown, you may want to get a special "flotation" bed, which can be rented for home use.

If you or your family notices reddened or broken skin on pressure points, call your doctor or nurse immediately. You may need special medications, dressings, or bed accessories (such as soft pads or heel protectors) to provide added skin protection.
 
OTHER RESOURCES
 
Family Practice Notebook http://www.fpnotebook.com
MANAGEMENT OF WOUND-Decubitus Ulcer Prevention
  • Management: Tissue loads while supine

    1. Positioning in bed
      1. Avoid positioning patient on ulcer
      2. Use positioning device to keep ulcer off surface
      3. Avoid donut-type devices (may cause ulcers)
      4. Written repositioning schedules every 2 hours
    2. Prevention for patients at risk
      1. Avoid positioning immobile patients on trochanters
      2. Use pillows and foam wedges
        1. Relieve heel pressure
        2. Relieve bony prominence pressure (knee and ankle)
        3. Sheepskin does not relieve pressure
      3. Maintain head of bed at lowest appropriate level
        1. Limit time head of bed is elevated
        2. Higher head of bed causes patient to slide down
          1. Sliding leads to shear forces
          2. Sacral ulcers may result

  • Management: Bed Types

    Static Surfaces

    1. Surface types
    2. Mattress
    3. Foam
    4. Static floatation
    5. Indications
      1. Patient in many positions without loading ulcer
      2. No bottoming out of patient
      3. Fully compresses surface to <1" at injury site
    6. Dynamic Surfaces
      1. Surface types
        1. Air-fluid (costs $100 per day)
        2. Low-air (costs $65 per day)
        3. Alternate air
      2. Indications for all dynamic surfaces
        1. Stage 3 or 4 Decubitus Ulcers
        2. Conditions not met for static surface bed
        3. Pressure Ulcer not healing by 2 to 4 weeks
      3. Additional indications for air-fluid or low-air bed
        1. Large Stage 3 to 4 Ulcers
        2. Ulcers on multiple turning surfaces
        3. Ulcer fails to heal on dynamic overlay

    1. Management: Tissue loads while sitting
    2. Avoid pressure on ulcer while sitting
    3. Properly position
      1. Consider patient weight
      2. Consider balance
      3. Consider patient stability
    4. Reposition so pressure points shifted once per hour
      1. Return to bed if this schedule can not be met
      2. Attempt to teach patient to shift weight every 15 min
    5. Appropriate seat cushion (avoid donut-types)
    See
  • Ulcer Grading ; Wound culture not indicated; Decubitus Ulcer Cleansing; Wound Dressing ; Nutrition in Wound Healing and Do not use Incontinence briefs (impedes airflow)
  •  
  • Complications

    1. Cellulitis (bacterial superinfection) or sepsis
      1. Stage 2-5 pressure ulcers colonized with bacteria
      2. Adequate cleansing and debridement prevents infection
    2. Osteomyelitis
      1. Suspect if non-healing ulcer after 2 to 4 weeks

    Pharmacology

  • Local Skin Anesthesia
  • Digital Block
  • Mepivacaine
  • EMLA cream
  • Lidocaine-Epinephrine-Tetracaine
  • Xylocaine
  • Bupivicaine
  • Wound Dressing
  • Odor Reducing Dressing
  • Saline Gauze Dressing
  • Impregnated Gauze Dressing
  • Absorption Dressing
  • Nonadherant Dressing
  • Hydrocolloid Dressing
  • Transparent Film Dressing
  • Foam Dressing
  • Hydrogel Dressing
  • Unna's Boot
  • Suture Material
  • Absorbable Suture
  • Mild Chromic Gut
  • Dexon
  • Maxon
  • Polydioxanone Suture
  • Vicryl
  • Nonabsorbable Suture
  • Braided Polyester Suture
  • Nylon Suture
  • Polybutester
  • Prolene
  • Silk Suture
  • Tissue Adhesive