Juvenile-HD

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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
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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
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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
Swallowing Warning Signs

INDEX Page

 
 

Some Warning Signs of Swallowing Problems

Any one of these signs could indicate a serious problem with swallowing. Consult your physician or nursing supervisor immediately.

  • Clearing the throat frequently.
  • A voice that sounds wet or "gurgly".
  • Spoken or nonverbal expressions about fear of eating, swallowing, or choking.
  • A delay in swallowing after food has been chewed.
  • Holding food or liquid in the mouth without swallowing it.
  • Exaggerated movements of the jaw, lips, or tongue.
  • Tilling the head back to eat or drink.
  • Swallowing several times on one bite.
  • Food or liquid falling out of the mouth.
  • Food left in the mouth after swallowing it or finishing a meal.
  • Coughing during or after the meal.
  • Fatigue or exhaustion after or during the meal.
  • Significant weight loss over time.

ABOUT SWALLOWING

Swallowing is a very complex activity. It involves coordinating the opening and closing of the mouth and lips and chewing while inhaling and exhaling. Food needs to be mixed with saliva, moved to the back of the tongue, and sent on its way down the esophagus by the swallow reflex. Those with HD are at serious risk of choking, aspirating, and even suffocating.

Preventing these problems in advanced HD is an ongoing challenge to a caregiver. Stuffing too much food into the mouth; gasping for air; gulping liquids; and poorly coordinating the complex movements needed to bite, chew, move, and swallow food increase the likelihood that food will unintentionally be aspirated. A speech therapist can make recommendations regarding positioning the patient, texture of food, and other issues that will make swallowing easier.

Proper positioning assures that the person is comfortable, reduces involuntary movements, inhibits reflexes, and accommodates any postural changes caused by dystonia. A "chin-tuck" manoeuvre can help to direct food toward the esophagus. Sitting upright with support for the head and neck can help to avoid the hyperextension of the neck that increases the risk of choking.

As a general rule, thicker and colder liquids are easier to swallow. Thin liquids are the most difficult because they are virtually impossible to control within the mouth. Water may be particularly dangerous! However, liquids from coffee to orange juice to soft drinks can be combined with commercially available thickeners, which change the texture without significantly changing the taste.

Drinking through a straw nearly always makes it easier to swallow liquids, especially thin ones, by limiting the amount taken at a time and by directing it to the back of the mouth. Check the length of the straw; one that is too long can injure the back of the throat or cause choking.

There are many different styles of "sport" bottles, cups, and mugs available today. Many of them are insulated to keep drinks hot or cold and have flexible straws attached. Since they have been designed to facilitate drinking liquids in a moving car or while engaged in outdoor athletic activity, many of them have grips that make them easier to hold, straws or "sippy" spouts that guide the liquid to the mouth, and covers that prevent spills. They are widely available throughout North America. Many people with HD find one that is particularly effective and comfortable and carry it with them throughout the day. Cups with spout style covers are also available in medical supply stores or catalogues.

It's a common safety practice to ask the person you're helping to do a "dry swallow" (that is, a swallow with no food or liquid in the mouth), after each time food is swallowed.

Pay close attention to food temperature; many people with HD have an altered sense of temperature and may burn their tongue or mouth on hot foods.

Some people with HD tend to "stuff" food; that is, place more food than they can possibly chew and swallow into their mouth as quickly as possible. This behaviour greatly increases the risk of choking and aspiration and should be discouraged. Providing or feeding them with a teaspoon will encourage small amounts per mouthful.

It's a difficult period when chorea progresses to a degree that the person with HD isn't regularly getting enough food into his mouth for adequate nutrition, and a large amount of food is wasted in the struggle to feed himself.

Unaware of how nutritionally inefficient his eating has become, he may see your intervening to feed him most of his meal as a final loss and a symbol of his dependence on others for his sustenance.

By assisting him with small parts of the meal earlier than he really needs your help, he may become accustomed to your help and be more willing to accept it when it is absolutely necessary for his safety and nutrition. For example, spooning a thick shake into his mouth at the end of a tiresome meal or placing a few pieces of a snack into his mouth at various intervals throughout the day may gradually help him to accept this degree of assistance.

A final thought:  Since this person may be hungry, tired, irritable, and unable to wait, it may be wise to help him eat first if you have several people to assist at the same meal, even though he may take longer to assist than others in your care. If you can provide the person with HD with a comfortable experience eating, meal after meal, then you are an excellent caregiver!

COUGHING, CHOKING, AND ASPIRATION PNEUMONIA

If you've helped someone with a swallowing disorder to eat, you know that it is often a difficult task for both of you. You might recall him coughing after swallowing a mouthful of food and waiting through that tense moment for him to stop and take his next breath to assure you that he is not choking.

Never consider coughing during a meal as a routine part of eating. Coughing is a defensive reflex to prevent choking. Consider it Mother Nature's alarm that there is a serious problem to be addressed immediately. Report coughing while eating to your supervisory nurse immediately for assessment.

Choking, indeed, is a very serious risk factor. Be aware of this every time you help someone with HD to eat a meal. Most people with HD develop a swallowing disorder, or "dysphagia", at some point in the course of their disease. Often the first sign is a serious unanticipated choking episode. Choking and aspiration pneumonia are not uncommon causes of death in people with HD. Individuals with swallowing problems need to have their temperature and lung sounds monitored regularly for signs of pneumonia.

Learn the Heimlich manoeuvre so you'll be prepared to respond to a choking incident. Make sure everyone who assists this person to eat is practiced in the manoeuvre. It may be reassuring to explain or demonstrate it to him if he has previously had a serious choking incident. Listen very carefully to the instructions you are given on how to help this person eat his meal. Take no shortcuts; take your time. Check for proper positioning every time you put food in his mouth. Eliminate as many possible distractions in the room as you can. Double-check the texture of the food that's been specially prepared for him. Be certain liquids are thickened!

Remember, this person may be very hungry and very tired and want to race through the meal. Take your time for safety's sake. If helping him eat takes too long or is too tiring for him, arrange to have him eat less food more often throughout the day.

CREATING CULINARY MASTERPIECES

WITH PUREED FOODS

Physicians or speech/language therapists may recommend that people with serious swallowing problems and an increased risk of choking eat a diet of puree consistency.

At home or in long-term care facilities this is typically done by placing each item of a meal into a food processor and blending it beyond recognition, except for its basic colour. As if the anxiety of choking were not enough, looking forward to a daily menu of mush that looks like commercial baby food only adds further insult to injury.

However, there is an alternative. You can plan and prepare an entire menu cycle of moulded dishes, casseroles and loaves that taste, smell and look appetizing, but are the consistency of puree.

During the holiday season, department and specialty stores sell plastic candy moulds to make lollipops or chocolates in your kitchen. Like those moulds of bunnies, Santas, and ghosts, moulds of chicken legs, pork chops, broccoli florets, pear halves, and fish filets are also available. A selection of these will make your meals much more attractive.

For example, cook a chicken, remove its meat, place it in a food processor, and blend it to puree consistency. Add bread crumbs, egg whites, or a commercially available thickening product. Then place this chicken mixture on a plastic sheet with the multiple chicken legs moulded into it and freeze it. When chicken is on the menu, pop one leg from the mould, baste it, and heat it in a convection oven. It maintains its moulded shape and your kitchen smells like you're cooking... chicken!

With gravy and garnish, it looks and smells just like the unaltered chicken the rest of the family is having for dinner. It has the consistency of a chicken pate. It looks so real, it's not uncommon for nurses' aides to return moulded food to the kitchen because it looks like kitchen staff forgot to puree it!

By planning a menu of these moulded dishes and loaves (meat loaf, for example) and casseroles (tuna casserole, for example) and paying close attention to its required consistency, you can serve this pureed cuisine as an alternative to "baby food" in a three-section plate, originally designed for infants.

Nearly every major institutional food supplier in North America distributes these moulds to long-term care facilities, hospitals and other health care settings. Depending on the size of the facility, it rarely incurs additional costs or labour hours in the dietary department to prepare these pureed foods in moulds. At home, one Saturday of cooking and moulding can produce enough moulded dishes to last many weeks.

Source: A Caregiver's Handbook for Advanced-Stage Huntington Disease http://hdlighthouse.org/see/ch/15.htm