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Huntington's Disease Caregiving

What Is A Feeding Tube?
What Is A Caregiver?
What Is An HD Caregiver?
Caregiving For A Spouse
Caregivers Bill of Rights
Helping Your Loved One
Your pHD Is Unique!
About Huntington's Disease
HD Articles of Interest
HD Guidebooks
Post Emergency Info
Early/ Early Intermediate Stages
Late Intermediate Stage
Swallowing Diagnostic
Speech & Language in HD
Swallowing Safety in HD
Early Advanced Stage
Swallowing Difficulties~Physician's Guide
Warning Signs of Swallowing Problems
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
Drinks/Shakes Recipes
Adaptive Equipment-Mealtime Help
Food Thickners
What Is A Feeding Tube?
When To Consider A Feeding Tube
Feeding Tube Decision in HD
Feeding Tube Resources
Advanced Stage
Late Stage Care
Commom Problems Encountered~Hospice Care
Temporary List of Resources
Personality Issues
Legal Issues
Disability Issues
At Home Care
Outside Care
Caregiver Tips
Caregiver Support
HD Facts
Helpful Forms-Download
Personal Articles/Stories
Miller Messages
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How-To Tips
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When the body's natural immune system is weakened, as it is with any chronic illness or trauma, it is particularly important that the patient maintain good nutritional habits. Eating both the right amounts and right types of food will give the patient carbohydrates, protein, fat, and other nutrients that will help give them strength and may improve their ability to fight infection.

When the patient's dietary needs cannot be met by a regular well balanced diet, it may be recommended the patient  be placed on alternative means of nutritional support. Nutritional support options range from blended food products to commercial formulas, which are taken by mouth or by a feeding tube. The physician will choose the most appropriate route for nutritional support based on each patients gastrointestinal function, physical capability, and degree of cooperation.

Placement of a feeding tube does not always mean that eating by mouth is over but supplementation is necessary for proper nutrition and health.
A feeding tube can be short or long term and must be discussed with a physician and a nutritionist. A feeding tube must be cared for and the spot where it is placed is prone to infection or irritation.
The excess movement involved in HD may cause the feeding tube to become tender or even loosened. Aspiration can still occur with a feeding tube in place, so make sure the head is above the level of the tube to keep this from happening.
Enteral Nutrition means the formula is given to the patient through a feeding tube directly into the digestive tract. If the patient has a functioning gastrointestinal tract and cannot be sustained nutrition-ally through oral feedings, they must rely on Enteral feeding. This nutritional support must be ordered by a physician and considered reasonable and necessary.
Progression must be considered when making the decision. If the patient is at the end of their struggle and cannot utilize nutrients a feeding tube may not be helpful.
If the above listed techniques for safe swallowing are not successful a feeding tube may be considered. A physician will not place a feeding tube if all attempts at feeding by mouth have been exhausted. In some cases placing the tube can be detrimental and may not be the best decision.
Here are some times when feeding tubes may be needed:
  • severe nutritional problems
  • severe dehydration
  • aspiration pneumonia on several occasions
  • great fear of suffocation from choking or aspiration
Types of Feeding Tubes
There are several types of feeding tubes:

G Tube/PEG Tube - This tube goes directly in the stomach (percutaneous =through the skin; endoscopic gastrotomy=stomach tube). The G-Tube is designed to provide a convenient access route for the delivery of long term Enteral Nutrition. It is surgically placed into the abdominal wall. The tube is located below the rib cage and slightly off to the left. The skin surrounding the tube should be kept clean and dry, and in some instances covered with a gauze dressing.

A benefit of the G-Tube is ease of replace-ment, patient comfort and convenience of care. The most popular tubes are the all *silicone Foley type feeding catheters and the button tube.  Other tubes available are the Mushroom, MIC, PEG, and Malecot tube. The French size and Balloon size are needed when placing an order for a G-Tube.

A typical complication of the G-Tube can be the moderate amount of gastric leakage. Gastric juices are highly corrosive and can cause skin irritation.

* However, Foley catheters are used primarily for urinary applications and are not appropriate or recommended for tube feeding.

Types of Feeding Tubes continued

J-Tube (Jejunostomy Tube (PEJ) (PDF format)  The J-Tube is surgically implanted in the upper section of the small intestine called the jejunum which is just below the stomach. The tube will be located lower and more towards the center of the abdomen, when comparing it to the location of a G-Tube.

The primary reason for use of the J-Tube is to bypass the stomach and to be fed directly into the intestinal tract. The patient must always be fed with an Enteral feeding pump. The tube is sometimes secured in place with sutures. The skin surrounding the tube should be kept clean and dry and covered with a gauze dressing.

The placement of the tube is done by the physician. The type of tubes may vary.

NG-Tube  - The Nasogastric Tube is used for those individuals who are unable to ingest nutrients by mouth. The N.G. Tube is placed in either nostril, passed down the pharynx through the esophagus and into the stomach and is usually used for short term feeding. After placement is checked, it is then secured to the nose with tape. The amount of tube required can range from 36" to 45". Placement must be checked before each feeding.

Only a licensed physician or nurse may pass a N.G. Tube. The most popular tubes are the Silicone and the Polyurethane.

Always ask for the French Size and the Length when accepting an order for a N.G. Tube.


This method of feeding is achieved when a syringe is attached to the feeding tube and formula is poured into the syringe, it is allowed to flow into the tube by gravity. This method is very quick and simple. The only equipment needed for this method is a feeding tube, formula, and the proper size syringe.

The recommended types of syringes are:

60cc Catheter Tip Syringe for feeding

__cc Luer Tip Syringe for inflating the feeding tube


The Gravity Drip Method of feeding is achieved when a gravity feeding bag set is used to administer the patient's formula. The bag or set is filled with formula through an opening at the top.

The bags are marked in ml. for easy measuring. The bags are also equipped with roller clamps to control the flow rate, which is determined by the physician. Many bags have an ice pouch on the outside to keep the formula fresh during feedings. The bag must be changed every 24-hours to reduce the rate of bacteria.


The Pump Feeding Method is controlled by an electrical or battery operated device. The pump feeding set is thread through the pump and set to secure the rate of infusion ordered by the physician due to the patient's past or current medical condition.

Shield Healthcare Sales Representative will train new customers on how to use the equipment. Plus the instructions and proper usage are located on the side of the pump. An employee will be available 24-hours a day, 7 days per week via an answering service for emergencies. A back-up pump will be available if needed for replacement.

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