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

What's for lunch?

Adjusting to tube feedings is an experience that is extremely variable. For some, the feeding tube is put in before swallowing problems make eating dangerous. For them, the tube is an easy way to get medications down and get plenty of water. Supplemental feedings through the tube help maintain weight and nutrition. A meal of a tube feeding can be a real time saver for a caregiver. I have a can in the morning since that is the busiest time for my husband caregiver. Not having to fix and feed me breakfast on top of getting me washed, dressed, and beautified to face the day is great.

The choice of what to put down the tube depends on several factors; caregiver's time, digestive problems, medical conditions, insurance coverage. Very few tube feeding formulas have any dairy product in them because so many people are lactose intolerant. They may not know it until they begin consuming more dairy products in order to maintain weight.

Be aware that Ensure, Boost and other brands available at local stores are supplements and not "complete nutrition" even though they use those words on their website. Their FAQ page says, "Ensure ready-to-drink shakes and drinks can be used as a snack and as an occasional meal replacement." Their formulas are only to be used twice a day and one formula three times a day to "not exceed the Upper Tolerable Intake Levels (ULs) for any vitamins and minerals." The maximum calories in a serving is 350. That is only 700 to 1050 calories per day. Without other nutrition that is a very strict weight loss diet!

"Real" tube feeding formulas are able to provide all the nutrients needed to replace a normal diet and need not be for short term use only. These are unflavored and not intended to be swallowed, only used through a feeding tube.

Top brands such as Jevity have different types to meet the calorie requirements of individual patients. The higher the amounts of calories, protein, etc. the thicker the formula and the need for more free water. Free water is plain water with nothing added. Anything added requires a portion of the water to be used to flush the ingredients from your body, so coffee, tea, soda should not be considered as good fluid intake.

Nearly all contain fiber for bowel regularity. There are also specialized formulas for diabetics, people with liver, kidney, or lung disease. Your doctor or a dietitian or nutritionist can recommend a brand but be prepared to change brands if one doesn't work well for you.

The big question is always" Does Medicare pay for tube feeding formulas?" Yes, the formulas and supplies are covered by Medicare Part B and most insurance.

  1. Formula won't be covered unless it is the primary source of nutrition and you can't eat well enough to maintain your weight without it. Medicare covers tube feeding formulas if they provide all or the majority of your nutrition. Being able to swallow small amounts of specific foods doesn't disqualify you, but if you still eat most of your meals and just use the tube feeding as a supplement or convenience, Medicare won't cover it.
  2. A form/documentation by your doctor is required for Medicare reimbursement and a diagnosis of ALS covers all the requirements.
  3. Standard tube feeding formulas are covered as well as special formulas needed by diabetics, kidney or liver patients, etc. (Do an internet search for Medicare Part B Enteral Nutrition Reimbursement Manual.pdf. It lists many but probably not all covered formulas.)
  4. Natural formulas may be covered if your doctor documents an allergy or intolerance of standard formulas. Simply prefering a natural formula isn't covered. Unlike standard formulas, natural formulas cannot be left out of the refrigerator very long so careful storage and attention to freshness is necessary.
  5. The cost of foods and supplements used to make your own blenderized formula is not covered.

If you get formula through a Medicare provider, compare the amount of your copay against the price you would pay buying it yourself online—no prescription needed. Often prices are so jacked up by Medicare approved providers that you end up paying more copay even after Medicare limits the amount Medicare will pay.

Many people opt to continue using regular food by blenderizing it. Some feel this makes them feel more normal while others believe it provides better nutrition. Home blended, familiar foods are often better tolerated but are more time consuming for the caregiver and may not be as nutritional. Careful storage and attention to freshness is necessary. A proper balance of nutrients, not the latest health food fad, is necessary and this requires a cook who is knowledgeable or willing to learn. Eating what the family eats may be fine, but it does depend on how much time the caregiver has to devote to meal preparation. Caregivers are often overwhelmed and exhausted as care needs increase. It is important that both the person with ALS and the caregiver be open to using prepared formulas partially or completely.

Digestive problems when beginning tube feedings aren't the norm but do occur. Common problems are diarrhea, bloating, cramping, or nausea with feedings. There are a number of formulas available and a dietitian will evaluate you and suggest a formula and amounts. If there are problems, the dietitian can make changes until a solution is found.

A Little Noted Feeding Tube Plus

You know those times when the whole family has stomach flu and you are dreading catching it and the nausea, cramping, and weakness that proceeds every bout of vomiting? When you feel that building up, you can skip the worst of it by using the big syringe and plunger to empty your stomach. No barfing!

Often the solution to tube feeding digestive problems is an adjustment in how the feeding is given. Cold feedings cause cramps. (Putting the next few cans on top of the refrigerator brings them to a comfortable temperature for me.) The first feedings need to be small and given slowly as tolerance increases. Even later, too much feeding at once causes problems. Some people can tolerate a couple of cans at once, but many, especially those not yet on a vent or using BiPAP after eating, have problems with big volumes. Using the plunger to push feedings in is not necessary or comfortable. Use the big syringe as a funnel and let it flow in by gravity.

Some people do better with feedings given at a slow drip. The feeding can be given from a bottle or a bag suspended from a pole, hook, chandelier, or on a special pump to precisely measure the drip rate. That is seldom necessary because the tubing from the bag has a clamp that can regulate the drip rate. Running this type of feeding overnight with an occasional "snack" during the day can free you from the tube and make moving around easier.

Feedings should be given sitting up just as you would normally eat a meal, and you should remain sitting up for at least a half hour after eating. heartburn (esophageal reflux) is no more common with tube feedings than regular food, but sitting up will help prevent it in people prone to heartburn. If you have home nursing care, you will once again find your nurses applying nasogastric tube feeding rules. A nasogastric tube passes through the sphincter (muscular valve) between the esophagus and stomach. The tube can keep the sphincter from closing completely and allow the feeding and stomach acids to leak back up the esophagus, especially when lying down. So a nurse won't let you lie flat, even you never get heartburn and could take your feedings standing on your head!

A Warning

If the person has a trach as well as a feeding tube, be certain that every caregiver is alert to the risk of mistaking the balloon port on the trach tube for the feeding or medication port on the feeding tube. The ports can look very similar, right down to the color. Feedings given during the night may be hooked up without turning on full lighting and be attached to the wrong port. Really unlikely, but stranger things have happened.

Too often problems that are attributed to tube feedings are no such thing. Bloating, gas, abdominal distension, nausea, and vomiting are all signs of constipation. Unrecognized and untreated this can lead to a bowel obstruction, a serious problem often requiring hospitalization.

This problem is especially common in the week following having the tube put in. Any anesthesia puts the bowels to sleep and they can be slow to wake up and resume the muscle contractions that move food along the digestive tract and turn it to fecal matter and cause a bowel movement. If you are one of the lucky few who escape from the hospital within hours of having the feeding tube put in, it is extremely important not to begin tube feedings until the bowels are back at work. Use a stethoscope or put your ear to the person's belly and listen for gurgling. It won't be a constant sound but should be there. That indicates all is well and slow, small feedings can begin. Passing gas is another sign that the bowels are working, and actually having a bowel movement is cause for great joy and celebration!

Prescription pain meds are also notorious for causing constipation. That doesn't mean you have to suffer, but you should take extra precautions. As mentioned earlier, a stool softener (some form of docusate sodium, available without a prescription) started before you go in for your feeding is very helpful. It prevents the stool from hardening too much as it moves through the bowels. It is available as a liquid but the pharmacist at the drug store may have a day or two delay in getting it in stock. If you take it by mouth before getting your feeding tube, DO NOT take it straight! Put it in orange juice or other thick liquid or it will burn all the way down. Once your feeding tube is in, you can put the Docusate liquid down the tube.

Until you are well established on tube feedings and having regular bowel movements, keep track of when you last had one.

A little tutorial about the consistency of bowel movements is needed here. Diarrhea and liquid stools are not the same. Diarrhea stool contains brownish water with bits of stool. That is likely to indicate that you cannot tolerate the type of formula being used. It is also common after time on antibiotics. Liquid stool is a thicker brown liquid that can be from either of the above cases. More importantly in this situation, it can also indicate constipation or blockage since only liquid stool can make it around the compacted stool in the bowel. Unless the amount of liquid stool is huge and frequent, the cause is constipation with obstruction. It cannot be counted as a bowel movement. Give a strong dose of a laxative. If no results in 24 hours, repeat it, or step up to an enema. If 5 days pass with no real bowel movement or the person won't eat, is nauseated, call the doctor. If vomiting starts, call immediately or go to the Emergency Room, as you have reached Code Brown Concrete Alert and may require medical dynamite.

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