Muscular dystrophy (MD) is a group of inherited muscle diseases that cause progressive muscle weakness and wasting. As the disease progresses, the loss of muscle strength can make all manner of daily tasks challenging, including eating. Some patients find it hard to hold cutlery, chew, and swallow food.
One supportive therapy for managing this effect of muscular dystrophy is tube feeding via gastrostomy tube. This allows for the delivery of fluid, liquid nutrition, and medications directly into the gastrointestinal tract if a person can no longer safely chew and swallow enough food.
What is tube feeding, and when might it be considered?
Tube feeding is administered through a surgically implanted gastrostomy tube that is placed directly into the stomach via the abdominal wall for nutritional support. A person’s care team may consider it when eating becomes more difficult for the patient and they start to lose weight.
According to a 2023 review of case studies, the most common reasons to start tube feeding for people with neuromuscular diseases are:
- swallowing difficulties, or dysphagia
- aspiration pneumonia, a lung infection that can develop when a person breathes food, liquid, vomit, or saliva into the airways
- weight loss due to inadequate nutritional intake.
- Other indications for starting tube feeding include not getting enough fluids, a reduced ability to breathe normally, meals taking a long time, or a person with MD experiencing fatigue during mealtimes.
In almost all people with Duchenne muscular dystrophy, gastrostomy becomes necessary. People with other types are less likely to develop malnutrition, but swallowing difficulties are very common in people with myotonic dystrophy type 1 and oculopharyngeal muscular dystrophy. People with facioscapulohumeral dystrophy may also need a feeding tube.
Tube feeding reduces the risk of aspiration, a common cause of lung infections and death in muscular dystrophy patients, and allows for sufficient nutrition without chewing or swallowing.
Feeding tubes still allow patients to eat and drink by mouth for pleasure, and many use feeding tubes to supplement their nutritional requirements.
With tube feeding, the quality and quantity of food can be easily adapted. Special formula diets contain optimal proportions of fat, protein, and other essential nutrients. If preferred, patients can also be fed regular food that has been liquefied in a blender. However, the risk of tube clogging is higher with liquefied foods.
How is the need for tube feeding assessed?
The decision to insert a gastrostomy tube (or G-tube) for MD-related swallowing problems takes place between a person with MD, their caregivers, and their neuromuscular team.
If a person with MD is losing weight or not eating enough, their care team will refer them to a dietitian. They may suggest supplements or recommend diet changes. This may improve energy levels, nutrition, or weight before a feeding tube is necessary.
However, these changes may not be enough for some people with MD. The dietitian may then recommend a gastrostomy tube.
For people who have difficulties with chewing and swallowing, a care team may refer the individual to a speech and language therapist to assess a person’s needs and work with the dietitian to discuss the need for a gastrostomy tube.
A care team might recommend a gastrostomy tube before eating-related symptoms get worse to prevent problems further down the line.
Questions to ask your care team
People with MD have several different factors to consider ahead of tube placement. You might want to ask your doctor the following questions:
- What safety concerns do you have about my current swallowing ability?
- Am I at risk for aspiration?
- How will a feeding tube help address my recent weight loss, nutritional intake, and hydration needs?
- Is my heart and lung function good enough to go ahead with sedation or anesthesia during placement?
- Will all nutrient intake need to take place through the tube?
- Which type of feeding tube and placement procedure do you recommend for my situation, and why? How much say do I have in this?
- What kind of feeding schedule and formula type would best fit into my daily life?
- What training will my caregivers and I receive on daily tube maintenance?
- Who do we contact in an emergency?
What types of feeding tubes are available?
Two types of feeding tubes are available. The decision depends on comfort and visual preferences.
Percutaneous endoscopic gastrostomy (PEG) tubes
In people with MD, percutaneous endoscopic gastrostomy (PEG) tubes are the most common type.
A surgeon inserts the tube through the abdominal wall into the stomach during a surgical procedure in which the patient is under mild sedation. An internal balloon or an external bumper holds the tube in place.
Button tubes
After the insertion of a PEG tube, the patient has the option to switch to a button tube once the tube entrance site has healed.
Button tubes are easy to disconnect when you don’t need them. They are flat and can be easily hidden underneath clothing. An external extension set is only attached for feeding.
Some patients prefer button tubes for their discreet appearance. PEG tubes are, however, more comfortable to handle without help because the outer part doesn’t need removing between feedings.
What happens during, after feeding tube placement?
The most common gastrostomy procedure is PEG. Before the procedure, a team will assess your ability to breathe normally.
People who require mechanical ventilation may need specialist support from a chronic respiratory failure team. As the procedure uses either local anesthetic (to numb the area of the procedure for adults) or general anesthetic (for children), people with MD may need additional checks or precautions. A patient may be less likely to experience complications with an injected rather than gas anesthetic.
Even if the surgeon assesses that you’d be sensitive to certain types of anesthetic, another option will likely be available.
A PEG procedure takes about an hour. The surgeon passes a thin, flexible tube called an endoscope, which has a camera attached, through the mouth and into the stomach. Using this, they can determine where to place the feeding tube. They will make a small opening in the skin and insert the tube into the stomach.
This method may not be suitable for some people, so a surgeon may recommend a radiologically inserted gastrostomy (RIG) instead. A balloon holds a RIG tube in place.
A surgeon experienced with neuromuscular wasting conditions will be able to assess which procedure is safest for you, discuss any risks, and manage your expectations
After the procedure
Afterward, you will head to a recovery area to wait for the anesthetic or sedation to wear off.
Soreness at the insertion site is normal and should feel better after a few days. Your surgical care team may offer pain relief, or you may need to stay in the hospital overnight for observation.
The care team will check that the tube is placed correctly, clean it, and show you how to care for it. They will also provide a small amount of feed or fluid through the tube to demonstrate how it works and provide some postoperative nutrition.
Your neuromuscular care team and dietitian may arrange visits to ensure you’re getting the right nutrition, and your surgeon may request follow-ups to find out how you are doing with the gastrostomy.
You may feel some uncertainty, but time, practice, and clinical and community support can help you get more confident with your feeding tube.
What is daily life with a feeding tube like?
With a feeding tube, many adults with MD can eat and drink for comfort while making sure they still get the proper nutrition.
Choosing formula
Your dietitian and neuromuscular care team can help you decide which type of formula you need so that you have enough fluids, calories, vitamins, and minerals. This may change over time depending on your tolerance and shifts in nutritional needs.
Feeding method
The type of feeding method can affect when you eat and what it’s like. Different methods to administer food include the following:
- Bolus feeding: Bolus feeding uses a syringe to administer food. It is usually done four to six times a day, depending on the patient’s nutritional needs. This is the quickest option and takes five to 20 minutes.
- Gravity drip feeding: In gravity drip feeding, a bag with liquid food is placed above the patient so that the food drips down by gravity. Feeding by gravity drip usually takes 30 minutes to an hour.
- Continuous feeding: This method uses a pump to deliver the food slowly and continuously into the stomach over several hours.
Your care team may advise you to sit at a 45-degree angle during feeding to prevent aspiration pneumonia.
Tube maintenance and cleaning
Your doctor will help you learn how to care for the skin around the tube site and handle issues like the tube falling out or getting clogged with food. It may be helpful to rotate the tube a couple of times a day to prevent it from getting stuck to the stomach wall.
General care tips for the tube include:
- Wash the tube with soap and water at least once a day.
- Dry the area with a clean cloth after each cleaning to help prevent bacterial growth, soreness, redness, and itching.
- Flush the tube with warm water before and after each feeding to prevent clogs.
- Have the tube changed regularly. Your care team can tell you how often your specific type of tube needs to be changed.
Abdominal binders or protective belts are available to prevent the G-tube from getting caught on clothing and secure the tube.
What are the possible complications?
While a tube may be necessary to ensure adequate nutrition, it can cause some complications.
These include:
- ongoing stomach problems, including constipation, nausea, and diarrhea
- leakage of stomach contents at the insertion site
- infection
- aspiration pneumonia
Let your care team or healthcare provider know if you experience warmth, swelling, redness, swelling, or pain around the insertion site. This is a sign of infection.
The tube can also fall out, which is a medical emergency. Head to an emergency room if the tube slips out of place in the first 6 to 8 weeks of having the tube inserted.
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