While ALS is the most common motor neuron disease, we also treat all other forms, including:

• PLS (Primary Lateral Sclerosis), affecting the upper motor neurons in the brain and spinal cord
• PMA (Primary Muscular Atrophy), affecting the lower motor neurons from the spine to the muscle
• PBP (Progressive Bulbar Palsy), affecting the speech, swallowing, and breathing areas of the brainstem
• Kennedy’s Disease, an inherited disease that affects lower motor neurons

What is a feeding tube?

A feeding tube is a small, flexible tube, about the diameter of a pencil or smaller, used to allow liquid nourishment to enter the stomach directly, bypassing the mouth, throat and esophagus. The feeding tube is often called a PEG tube, which stands for percutaneous (through the skin) endoscopic (using a scope) gastrostomy (an opening in the stomach) tube. It is also called a gastrostomy tube, or G-tube.

Why consider a feeding tube?

Some people that have ALS can develop difficulty swallowing, and this can develop significantly over time. This can lead to malnutrition and weight loss from inadequate protein and calorie intake. When this happens, the body uses muscle as a source of energy and protein and this accelerates the progression of weakness.

A PEG tube or feeding tube can restore adequate protein and calorie intake, and helps people feel better. The risk of swallowing difficulty is that food or liquid taken through the mouth may be inhaled into the airways rather than the stomach. This is called aspiration, and causes infection and pneumonia. Thin liquids and foods that crumble are especially likely to be aspirated.

When is the right time to put in a feeding tube?

Because of the nutritional deficiencies and the risk of aspiration, we recommend placing a PEG tube relatively soon after swallowing symptoms begin. One of the reasons is that progression of breathing muscle weakness often occurs at the same time swallowing weakness does. When breathing is stronger, placement of these tubes is easier and safer. Also, good nutrition and hydration can help to preserve available breathing muscle strength for as long as possible.

Can you still eat and drink if you have a PEG tube?

The gastrostomy tube is an alternative way of eating and drinking, but this does not affect eating by mouth. In the earlier stages of swallowing weakness, the tube is used to supplement oral intake. But if the weakness progresses and swallowing foods and fluids becomes too much work or becomes dangerous, it becomes the sole method of nutrition and hydration. There are many liquid formulations that give a 100% complete and balanced diet. If someone is still able to safely swallow small amounts of foods for pleasure, it is appropriate to do so.

Can medication be given through a PEG?

Many medications can be crushed, dissolved and given through the PEG. Some capsules can be opened and sprinkled into water or liquid food. Medication taken this way should be well mixed with water so that particles do not remain in the tube, where they may solidify and cause a blockage.

No time-released medications may be crushed or dissolved to administer through the PEG. If there is a liquid preparation of a medication, it can be easily given through the tube. Some medications come in patches and are absorbed through the skin. These include certain hormone supplements and some blood pressure medicines. Check with your doctor or pharmacist about alternative preparations of your medications.

What about heartburn?

If reflux (movement of stomach acid from the stomach up to the esophagus or throat) is a problem, medications to reduce acid formation are useful. This is not caused by ALS, but inflammation of the stomach or esophagus is common and can result in stomach pain or heartburn when using the PEG. If someone experiences reflux of food up the esophagus, a different medication or feeding pattern is recommended.

What is involved in placing a PEG tube?

The actual placement of the tube generally takes about a half hour. It is done with sedation given in a vein, and numbing medication at the insertion site on the stomach. Most people experience moderate pain for a few days after the tube in placed, and it is usually relieved well with over-the-counter pain medications.

The day of the procedure, a nutritionist meets with you and calculates your nutritional needs and indicates to the physician the type and amount of formula to prescribe. Food and supplies will be delivered to your home. You will also be taught how often to feed, the length of time for each feeding and how much free water to take by tube each day. A nurse will come to your home the day after your procedure to start your feedings and teach you and your family how everything works.

Your feeding may be given manually, from a bag that empties by gravity, or by a pump, which delivers a specific amount of the feeding formula per hour. You may discuss both alternatives during your visit with the Gastroenterologist (the digestive system doctor) before the placement of your tube. You may also discuss the type of feeding schedule that will best meet your needs. Some or all of your feeding can be given during the night while you sleep if that works best with your schedule and your particular digestive tract.

It is important that you begin to feed slowly in the beginning to avoid gas, bloating and/or diarrhea by going too fast. Over time, the number of feedings per day will be reduced, and the volume and speed of feedings increased as your stomach gets used to this new food.

Is a PEG tube noticeable?

The PEG tube is underneath your clothing and not visible when not in use. It can be formed into a loop and taped flat against the stomach. It is very easily concealed.

What happens if the PEG tube accidentally comes out?

If the tube is accidentally pulled out, it can usually be replaced easily at an emergency room with a Foley catheter, which is used for bladder drainage. The Foley has a bulb at the tip that is inflated after it is inserted to hold it in place. This is easy to do, and no anesthesia or sedation is needed. However, it should be done within hours of the PEG coming out, because if you wait until the next day, the small hole from the skin to the stomach may already be sealing up. With the site secured open with the Foley, your stomach doctor can then place a new PEG easily.

How do most people like the PEG tube?

We have not had patient regret getting PEG tubes. PEG tubes help people to live well, remain well nourished, and well hydrated. They greatly reduce the work of eating, and weight loss can be stopped or reversed. Some people can return to their usual body weight after insertion.

All our muscles and organs require good energy from good nutrition, including our breathing muscles. PEG tubes can help to improve quality and length of life. Good nutrition and hydration gives your body what it needs to fight the disease, repair damage and to try to grow new nerves. It is the best fight anyone has against ALS.