Tube Transition Patient and Family Resources

A child may need tube feeding when they are not able or willing to eat enough to support growth and good health. For example, this can happen when a child has or has had:

• Complex medical conditions or procedures
• Difficulties with swallowing
• Negative experiences with feeding
• Difficulties breathing normally
• Pain associated with feeding
• Gut issues
• Motor problems
• Sensory issues
• Negative environments (for example, parental pressures)

Tube dependence happens when a child continues to receive the majority of their nutrition from tube feeds, even when they are not needed for medical reasons anymore. Some children never learned the skills needed to eat and drink. Other children are not motivated to eat and drink due to a lack of hunger and fullness cues.

If your child needs tube feeding, oral stimulation will help prevent oral aversions, maintain oral-motor skills and maintain their ability to process oral sensory input. Oral stimulation should be pleasant and enjoyable. If at any point your child become distressed, stop and try again later.

Non-nutritive oral stimulation

Non-nutritive oral stimulation is positive touch to your child's face and mouth, without the use of food. Examples of non-nutritive oral stimulation include:

• Including your child in the family meal. This allows them to see different foods and experience different smells
• Encouraging your child to explore their hands or different toys with their mouth
• Encouraging your infant to suck on a soother or a pumped breast during tube feeds
• Giving pleasant or loving touches around your child's face and mouth
• Giving firm, but gentle massage on your child's upper body and face

Nutritive oral stimulation

Nutritive oral stimulation provides positive experiences with small amounts of food. Examples of nutritive oral stimulation include:

• Offering tastes of a variety of foods and liquids (if they have a safe swallow)
• Encouraging your infant / toddler to suck on a soother, a spoon or a toy dipped in milk or purees
• Rubbing a small amount of milk or purees on your child's lips or gums

1. Create mealtime routines for the whole family
   • Wash your hands before and after each meal and snack
   • Offer food at the table only
   • Have at least 2 hours between meals and snacks. Avoid grazing on foods in between to encourage coming to the table hungry
   • Eat together to allow modelling to happen
   • Avoid distractions during mealtimes, such as TV, IPad, music, toys, etc.
2. Have tube feeds mimic an age-appropriate mealtime schedule
   • Offer bolus feeds at the table after offering food orally
   • If possible, minimize continuous or night-time feeds. Develop a feeding schedule consistent with oral eating times. Always speak with your doctor or dietitian before changing your child's tube feeding schedule
3. Offer a range of food options
   • Model meal options after typical family meals
   • Aim to offer at least 3 food groups at meals and at least 2 food groups at snacks
   • If needed, modify food textures to meet your child's oral feeding skill level
   • Offer at least one preferred food at every meal
4. Keep mealtimes positive
   • Avoid pressuring your child to eat
   • Avoid drawing undue attention to your child's intake
   • Keep mealtimes to no longer than 30 minutes to avoid them becoming a negative experience