Self Care Tips

• Choose Appropriate Bottle/Teat – ask your OT or Speech Pathologist to recommend one that will suit your child’s needs. For babies 0-6 mths try a Haberman Teet Bottle (designed for children with cleft palate by more energy efficient for children with CP and other motor conditions).
• Desensitise Mouth – if your child has hypersensitivity (tongue thrust, jaw clench when food/drinks are inside their mouth) try and stimulate around the mouth though touch or use of icecube, to desensitise area prior to feeds.
• If your child is unable to breast-feed, they may still have the option of getting your expressed, nutritious breast milk through specialised teats/bottles or via ng tube. Contact Australian Breast Feeding Association, a lactation consultant or midwife for information on expressing and a speech pathologist for advice on feeding.

Lee’s Blog: Asialee could not suckle due to her CP, however I expressed for 6 mths using a Medela Symphomy Pump and she was able to drink first by eyedropper, then haberman teat, then slow flow teat on normal bottle. We would have used an NG tube if these methods weren’t successful. I am sure the breast milk has strengthened her immune system. She is 3 and only ever had 2 colds despite all the hospital appointments!

• Position child in upright as recommended by physiotherapist see Positioning PDF
  Download Positioning at Mealtimes by Novita

• Thickened Fluids are easier to swallow– Use guarcol or easy thick to thicken fluids. Get advice from your speech pathologist to determine best consistency for your child.
• Can use routine to prepare your child for mealtime.
• Desensitise mouth as per difficulty sucking section.
• For drinking – Hold the cup in your right hand, Use trigger hold with your left thumb under child’s bottom lip and forefinger gently touching adams apple of child throat. Can encourage jaw to close with left hand to promote good lip seal and reduce dribbling and lost fluids. Can gently press throat to stimulate swallow reflex.
• Try using flexible cut out cups (see equipment section)
• Here are some tips on suctioning to help manage saliva and secretions
  Download Suctioning Information

Chewing involves several steps – opening the mouth, moving the tongue from side to side, moving jaw up and down, pushing food to the back of the mouth by tongue and swallowing.

• Position child in upright as recommended by physiotherapist see Positioning PDF
  Download Positioning at Mealtimes by Novita

• Can try using “chewy tube” to encourage chewing between meals
• Desensitise mouth as per difficulty sucking section
• Start with foods that dissolve easily – rice crispbread, (or foods with similar texture to cheezels and burger rings)
• Place food between teeth and cheek to encourage side to side tongue movement.
• Assist massage outside of cheeks to encourage chewing movement.

Some children use tube feeds for 100% of daily calories and nutrition, whilst others use tube feeds to “top up” calories/nutrition/fluids. Discuss your options with your child’s dietician, gastro-enterologist and speech pathologist.

You can administer tube feeds by bolus (injection), gravity feed (bottle/bag feeds into tube), or by timed pump.

Bolus Feeds

Pros: quick and easy for top up feeds. Less prep time.

Cons: risk feeding too quickly, which may cause reflux.

Gravity Feeds

Pros: quick and easy. Some children expend less energy consuming these feeds.

Cons: risk feeding too quickly, which may cause reflux.

Pump:

Pros: Safe timed feeds. Ability today/ night feed whilst child is asleep.

Cons: Feeds can take a lot longer. More set up and pack up than other methods.

Some Tips:

If you are doing frequent (daily) tube feeds, a weighted tube will help prevent reflux or coughing the tube up. Download the Tube Feeding PDF published by Children’s Hospitals and Clinics of Minnesota.

Some children use peg feeds for 100% of daily calories and nutrition, whilst others use peg feeds to “top up” calories/nutrition/fluids. Others have a peg inserted and use it rarely on days where they’ve had multiple seizures, severe reflux or difficulty swallowing. Discuss your options with your child’s dietician, gastro-enterologist and speech pathologist.

Pros: Food is directly pumped to stomach. Reduced risk of aspiration.

Cons: Child needs to undergo surgery to insert peg and anaesthetic which has its risks. Saliva and digestive enzymes do not predigest food as they do in oral feeds. Bowel motions may be affected due to limited fibre intake. Limited oral stimulation or practice if all feeds administered by peg.

PEG feeds can be administered 3 ways:

• Bolus FeedsPros: quick and easy for top up feeds. Less prep time.

  Cons: risk feeding too quickly, which may cause reflux.

• Gravity FeedsPros: quick and easy. Some children expend less energy consuming these feeds.

  Cons: risk feeding too quickly, which may cause reflux.

• Pump:Pros: Safe timed feeds. Ability today/ night feed whilst child is asleep.

  Cons: Feeds can take a lot longer. More set up and pack up than other methods.

For more information download the PEG Feeding information document below.