ALS From Both Sides, ALS Patient Care
ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient

When to Get a Feeding Tube

When choking first begins it is time to have a swallow study done. You will be given various textures of food to chew and swallow. The food is mixed with tasteless white goop so that as you swallow, all the stages of swallowing can be seen on X-ray. A therapist can then see how bad your swallow is and recommend ways to make eating safer; chin down to swallow, thickened liquids, double swallow each bite, blenderizing meats.

Even if your swallow study shows minimal swallowing problems, it is time to begin considering if you will use a feeding tube. ALS will progress and swallowing will become hazardous. There really is no point in waiting. Caring for an unused feeding tube is a simple matter of a quick wash of the stoma with soap and water and putting a few ounces of water down it daily. Many people have trouble swallowing pills when swallowing problems first start. Crushing them and putting them through the tube makes life easier. When you can no longer feed yourself, a can of formula is a time saver. Breakfast from a can really helps shorten the time and effort of getting you up in the morning. And you can continue to eat normally until that becomes unsafe. Many people begin by using the feeding tube for quick meals and supplemental feedings. Later the tube is the main source of food and eating is for pleasure.

When to get a feeding tube is generally thought of as being determined by the onset of swallowing problems. While that is true, the degree of breathing problems is also very important in determining when to have a feeding tube put in. The usual recommendation is to have the feeding tube put in when your breathing capacity falls to around 50%. Even though you may not need the feeding tube for food and water yet, putting the tube in early greatly reduces problems. A breathing crisis during the procedure is unlikely and you will be all around healthier if it is done before you have trouble eating and drinking.

The feeding tube can be put in later but problems are more likely. Placing a feeding tube when breathing problems are advanced is complicated by difficulty keeping the patient well oxygenated while under anesthesia and, if intubation and a vent are needed, it may be difficult to get off the vent afterward. Another problem with delaying feeding tube placement happens as the diaphragm, the muscle that stretches across the bottom of the rib cage, weakens, allowing the stomach to move upward under the edge of the rib cage. That makes positioning the feeding tube through the abdomen into the stomach more difficult. Poor nutrition is debilitating making the procedure harder on the patient and increasing the risk of respiratory problems as well as infection.

Waiting until there is significant weight loss causes even more problems. Not being able to eat enough is slow starvation and reversing starvation is no where near as simple as getting food into them again! When starvation, even slow starvation occurs, body chemistry and metabolism changes. Cardiac problems are common. Refeeding Syndrome will happen when attempts are made to begin feeding. The person will be unable to digest the feedings, be nauseated, feel full too quickly, and may have abdominal pain. They are unable to tolerate feedings regardless of the brand of formula or the blenderized food given. The changes will need to be gradually corrected with supplements of a surprisingly wide variety of vitamins, minerals, and specific metabolites. This will require the care of a physician familiar with Refeeding Syndrome, generally a specialist in anorexia. Repeated lab work to monitor levels, prevent overdosing, and generally guide the process of refeeding is necessary, possibly daily at first.

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