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Huntington's Disease Caregiving

When To Consider A Feeding Tube
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When To Consider A Feeding Tube
Swallowing problems usually occur in a progressive fashion and are often overlooked at first as the patient makes many efforts to compensate for the increasing trouble with swallowing. Choking episodes, food spillage, the need for special meal preparation, prolonged meal times and respiratory or chewing fatigue all contribute to an aversion to eating.
A person with a neurological disease can often dread mealtime. This can be one of the reasons a patient may chose to use an alternative route for nutrition. A tube feeding is a way of providing food through a tube that goes directly to the stomach or gastrointestinal tract. There are many different types of feeding tubes that can be used. There are Nasal tubes that can be used for a short period of time.
Three methods of feeding include
  1. through the nose into the stomach (nasogastric)
  2. through the nose into the small intestine (nasoduodenal); or
  3. through the nose into the lower part of the small intestine (nasojejunal).

A surgically inserted feeding tube may be used when a person must be tube fed longer periods of time. Three feeding methods require surgery to insert the feeding tube into the GI tract:

  1. through the neck into the stomach (esophagostomy);
  2. directly into the stomach (gastrostomy); or
  3. directly into the lower part of the small intestine (jejunostomy).

Percutaneous endoscopic gastrostomy (PEG) tube is the most common type of tube used for people with a neurological condition who can not eat enough or eat safely. This is a tube that can be placed under local anesthesia and is well tolerated in patients who choose to have it done. This type of tube is simple to maintain, associated with less risks and is often done as a same day procedure. All of the feeding tubes can be used in addition to eating some food by mouth (to the degree that it is safe for them).

Presumed benefits of PEG in neurological patients are:

  1. Optimal nutritional and fluid intake
  2. Decreased risk of food choking
  3. Alleviation of patient and family stress
  4. Improvement in quality of life
  5. Increased survival
The actual PEG insertion should be performed by a gastroenterologist or surgeon familiar with your neurological disease.

When to get a Feeding Tube?
The following things should be indications for PEG tube placement:

  1. Detection of dysphagia - mild to severe.
  2. Inability to take adequate fluids
  3. Mealtime causes much distress and frustration and is thought to be a burden.
  4. 5% weight loss
  5. Vital capacity <1.5 liter
  6. Symptomatic aspiration from dysphagia that is not relieved by altered diet consistencies

When to get a feeding tube, continued

Any of the above factors can be reason to begin tube feedings. The earlier the better for most patients. The stress of eating a certain amount can be exhausting to many neurological impaired patients and a feeding tube can provide convenience and allow mealtime to be a pleasure to enjoy with family or friends. If < 5% wt loss has occurred  then the procedure is fairly low risk. If a PEG tube is placed early on then weight can be maintained and adequate nutrition and fluids can be provided that can then improve quality of life, minimize complications associated with malnutrition and has also been shown to improve survival.

There may come a point in the progression of dysphagia where any eating by mouth becomes unsafe and the use of a feeding tube is the only means of nutrition.

What can be put in a PEG?

Thin, liquid forms of food are either made at home by following special recipes or can be bought at the pharmacy in cans. Commercial prepared formulas provide many benefits including a standard, consistent amount of nutrients that meet all of the recommended nutritional needs, they are thin and allow for easy flow through the feeding tube.

For psychosocial reasons, patients may prefer to prepare a tube feeding from table foods. Following special recipes these homemade formulas can provide adequate nutrients including fiber that may help prevent constipation. Careful attention to preparation and storage is also necessary to prevent bacterial contamination.

Local pharmacies carry most tube feeding products and are usually willing to order any formula that is not stocked on the shelf.

Cost of Tube feedings

Most commercial formulas range from $1.00 to $2.00 per can. This can be costly, as the average number of cans needed per day for most patients is 6-8 cans. Homemade recipes can average $5.00 to $8.00 per day also. Instant breakfast powders mixed with milk is another good option that averages $5.00 per day for people who can tolerate milk. Insurance reimbursement is available for tube feedings under certain circumstances.

Good nutrition is vital to provide strength and prevent serious complications during the course of your neurological disease. Weight loss, dysphagia, weakness, and nutritional deficiencies can further cause frustration and discomfort in a person who is already suffering from a chronic disease.

If early intervention and education is provided then the quality of life and management of symptoms can be improved. An understanding of the progression of dysphgia symptoms and the relationship of swallowing problems to speech and respiration is essential to the timing of intervention.

Early intervention and knowledge about tube feedings can lessen anxiety and stress with eating and allow the benefits of good nutrition to continue.