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Huntington's Disease Caregiving

Feeding Tube Resources
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Swallowing, Coughing, Choking & Pneumonia
Swallowing~Giving Medication
A Practical Guide: Nutrition and HD & Resources
Diet & Nutrition in HD
Nutrition and Huntington's Disease
Nutrition Information for the Care Giver
Texture & Consistency/Thining & Thickening Foods
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What Is A Feeding Tube?
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Feeding Tube Decision in HD
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Feeding Tube Resources
TYPES OF TUBES
 
Gastrostomy Tubes/Buttons
Standard in many facilities.  The balloons can break facilities.  The balloons can break frequently in some patients.  Reportedly the tubes were recently changed to make the inside tips softer and inside the balloon.  These seem to be easily replaced and most economical.
 
They have the standard button without a balloon; some feel placement and removal is hazardous.  The tube does have advantages however.  The valve has been reported to leak by some.
 
A newer button on the market. Slightly lower profile than the Mic-Key, the inside tip is inside the balloon.  The balloon has a slightly different shape.  Easily replaced, competitive in pricing.  Some leaking reported.
 
FEEDING PUMPS
 
Ross (Abbott) Kangeroo Pump
Lss expensive than the Zevex.  Adequate for most non-mobile children/adults.
 
Zevex Portable Mini Feeding Pump-
Families have told me about a new device, EnteralLite  which is an Ambulatory Enteral Feeding Pump. The overwhelming favorite.  It is the smallest and lightest, charges the quickest and lasts the longest.  Has an interval feeding feature.  It works in any direction, does not have a "drip chamber".  It is the smallest and lightest, charges the quickest and lasts the longest. It has an interval feeding feature and works in any direction, and does not have a "drip chamber". This is an ideal device for mobile, active children making a significant contribution to their quality of life.
  • EnteraLite®
  • EnteralEZ®
  •  
    TESTING
     
    In PDF format
     
    The functional assessment of swallowing disorders consists of several procedures that allow the examiner to actually view the activities of swallowing while it is ongoing.  The purpose of these tests is to understand what is going wrong when a patient cant swallow and to identify methods or procedures to correct the problem.  The tests include: 
     
    Video Swallow Study-written for pediatrics but easy to understand for anyone.
     
    SWALLOWING
     
    Dementia - how to encourage healthy eating... For swallowing problems, remind the person to swallow with each bite, stroke ... Dementia explained ... Victoria (Logo links to further information) Print a fact sheet
     
    Fact Sheet: Dysphagia
    ... Fact Sheet: Swallowing Problems . ... What Conditions Increase the Risk of a Swallowing Problem ... Chorea
     
    Identification of Swallowing Patterns Associated with Dysphagia
    This wonderful website describes the 4 stages of swallowing briefly and then provides a series of QuickTime movies of videofluoroscopy studies that illustrate the Oral Preparatory Phase, Oral Phase and Pharyngeal Phase of normal swallowing. Contrasting films of the disordered swallow are included for Child Dysphagia, Adult Aspiration and Delayed Swallow and Oral Incoordination.

    Medical Complications caused by Eating Disorders - Definitions; Starvation; Treatment for Starvation; Amenorrhea (when your period stops); Heart Attack Warnings and What is Tube Feeding?
     
     
    TUBE CARE
     
     
    Mechanical Complications in Feeding Tubes - Written by and for nurses: Vigilant  care can prevent the most common mechanical complications of tube displacement, exit site problems, tube injury, and tube clogging.
     
    TIPS
     
    Do you know what is commonly used for a PEG patient with diarrhea? Yogurt. The bacteria in yogurt will help stabilize the digestive system and reduce the diarrhea.
     
     
    BED SORES & FEEDING PRODUCTS
     
     
     
    BOOKS OR BROCHURES
    Artificial Nutrition and Hydration and End-of-Life Decisions - Deciding whether to use artificial nutrition and hydration (often called "tube feeding") can cause conflict and anguish for family members. Food and water are so powerfully linked with comfort and caring that we find it difficult not to provide them, even when they cannot help the patient. This booklet answers questions about tube feeding, patient comfort, and what to consider when making this decision.
     
     
    ON LINE SUPPORT
     
    Here you will find helpful information about living with special tube feeding needs including a FAQ sheet on tubes.   The "Cookbook & Meal Ideas"  has a lot of good information.   The "Feeding Programs" links you to several good articles like "Thick and Easy" a complete line of products for people with swallowing difficulties.
    FACT SHEETS
     
    Patient Education: Factsheets
    Excellent information for anyone on a feeding tube!
     
    Children-Patient Information
     
    Children and Feeding Tubes
    PART 1: THE ISSUES also  in PDF format
     
     
    Ethical and legal aspects of PEG feeding. in HD-Although written for HD families living in the UK, there are some very good points made in this article discussing:
    • Consent
    • Advance decision making
    • Withholding Life-prolonging
    • Treatment(PEG feeding)
      hydration and feeding
    • Extra Safeguards regarding artificial nutrition and hydration.
    •  Legal reforms as they relate to PEG feeding
     
    When is it used?  How do I prepare for gastrostomy feeding tube placement? What happens during the procedure?  What happens after the procedure? What are the benefits of this procedure? What are the risks associated with this procedure? When should I call the doctor?
     
    What is a "Gastrostomy"?  Excellent information from finding out you should have a tube through care like will it hurt, what does it feel like, etc.
     
    Includes discussion on feeding tubes in patients with HD.
     
    The decision to tube feed is a very difficult one - the realization that there is a loss of skills, perhaps the guilt that you cannot manage some part of this, the prospect of surgical procedure and pain, and all the other emotionally charged issues with family, friends, and acquaintances includ-ing what it will do the getting people to help care for him at home and in school.
     
    The role of lifeprolonging technology.(terminal care)
    Dying patients need more than just having their misconceptions dispelled about CPR, ventilation, and other high-tech interventions. What they and their families feel, think, and want must be clear before appropriate decisions can be made. 10 page excellent article that discusses all measures used to in life support.
     
     
    The suggested treatment of patients with advanced dementia who have difficulty eating or swallowing is often enteral tube feeding. From American Family Physician
     
    Tube Feeding Care Administration Guidelines - The following guidelines and procedures will be followed unless otherwise ordered per physician or contraindicated based on the patients diagnosis or condition.
     
    Using a Pump for Tube Feeding -
    Caregiver instructions
     
    TUBES & MEDICATIONS
     
    Certain medications may interact with some formulas to inactivate the nutrients or change the way that the drug is absorbed.  Some medications can NOT be crushed or liquidified.
     
    Administering Medications via Feeding Tubes: What Consultant Pharmacists Need to Know - Drug-nutrient interactions, tube occlusion, and other complications can result when certain medications are given through a feeding tube. Here's an overview of what to look for to prevent these complications while providing optimal drug therapy to residents fed through a tube.
     
    Crush or Not To Crush Medication
    Home Nasogastric Tube Feeding
    ... If the letters "SR" appear after the drug name on the label, this indicates the medication is "sustained-release." Do not crush these pills.  When you can crush there are products such as:Dynamic Living: Crush pills for easier swallowing.
     
    Giving Medications Through a Feeding Tube - Information for caregivers.
     
    Clinically significant interactions-When giving the proper dosage form of a medication, clinicians must consider its pharmacodynamic and pharmacokinetic properties to avoid loss of pharmacologic effect.  Discusses Phenytoin, Quinolones, Warfarin
     
    What guidelines should be followed for patients on enteral feeds receiving Monoamine Oxidase Inhibitors (MAOI)?
     
    What guidelines should be followed for patients on enteral feeds receiving phenytoin?
     
    What guidelines should be followed for patients on enteral feeds receiving warfarin?
     
     
    Other Resources
    Advanced Stages of HD-Caregivers Handbook  Our Final Journey-End of Life