As a consequence of the disease, your child or loved one is likely to develop problems with swallowing at some stage. Swallowing, feeding and nutrition will need to be monitored carefully as the diseases progress. While the timeline may look different for each individual, at some point you will need to consider some form of intervention to support your child or loved one with feeding.

Fortunately, there are many options available to you. Your specialist, palliative care team, nurse and others in your care and support team will be able to support you to make an informed decision.

Weight management

Both weight loss and weight gain are possible consequences of feeding issues and interventions.

Weight loss can result from:

  • Reduced mobility and lack of physical activity, leading to muscle wastage
  • Difficulty chewing and swallowing, leading to lower food consumption

Weight gain can result from:

  • Consumption of a nutritionally rich diet via controlled feeding (described further below)
  • Reduced mobility and lack of physical activity impacting the ability to use energy consumed

Some individuals may require assistance to maintain an upright seated position to support them at mealtimes. You may wish to speak to an allied health professional, such as a Physiotherapist or Occupational Therapist to discuss available options.

Healthy food

Eating a healthy diet and staying hydrated are important for all of us. While your child or loved one can still eat orally, you may wish to ask your Dietitian or other medical and allied health professionals in your care and support team to suggest healthy meals to cook and a list of foods that are easy to swallow and have a high nutritional value.

Due to the nature of the diseases, improvements in diet will not eliminate any symptoms, but will help your child or loved one to live their best life.

Enjoy meal time

Eating and drinking are also social activities, shared and enjoyed by many. When problems do occur for your child or loved one, it can be an emotional experience.

You may wish to seek advice from your care and support team on ways to support you, your child or loved one, and any others you would like to continue to enjoy mealtimes with.

Thickened feeds

When eating and drinking starts to become difficult, there are some practical steps that may help. Using a straw to take sips of fluids or thickening them can make it easier to swallow and also make meal times relaxed occasions.

You may wish to speak with an allied health professional, such as a Speech Pathologist for assessment and support.

Bodhi with nasal tube

PEG tube feeding

There may come a time when oral feeding is no longer safe, and the risk of aspiration (when foreign materials such as food enter the lungs) and chest infections outweigh the wish to keep eating orally.

Percutaneous Endoscopic Gastrostomy is also known as gastrostomy or simply PEG tube feeding. To enable PEG tube feeding, a minor surgical procedure is performed to insert a small, flexible feeding tube through the abdominal wall and into the stomach. Your child or loved one will be placed under anaesthetic for the procedure.

PEG tube feeding allows nutrition, fluids and medications to enter the stomach directly. In avoiding the mouth and oesophagus, it also avoids any difficulties in chewing or swallowing and any aspiration risk.

It is common to be concerned about if or when to introduce a PEG feeding tube. Your specialist and the gastroenterology team will be able to support you to introduce it at the best time for your child or loved one.

Factors that will be considered when making the decision include:

  • whether it will assist with the safe administration of medicines
  • whether it will help with nutrition and to minimise any aspiration risk that may be associated with chewing and swallowing difficulties
  • risks and benefits of anaesthesia in relation to the disease stage