Getting started...are we sitting comfortably?Dysmotility will affect posture so it is important that your child sits as upright as possible in a suitable chair - an occupational therapist may be able to provide help with a special chair if posture and head control is a major problem.
Bring the child forward and sit squarely on their bum - this should encourage a straight back.
DrinkingDuring their first year, a child's oral movements will change from suckling - sucking - munch - chew. When a child has the 22q deletion, they quite often have problems with movements of the back wall of the throat, weak co-ordination of opening and closing of the oesophagus and abnormal movement of the oesophagus (dysmotility). This makes it very hard for children to progress onto lumpier foods (source Children's Hospital of Philadelphia).
SuckingSome children have a weak "suck" and may get tired of drinking from a bottle (especially if they also present with heart problems). Also watch for "gulping swallows" as this may indicate that the baby is struggling to control the passage of milk/fluid from the back of the mouth down the oesophagus. Experiment with different teats and bottles - "soft bottles" can be slightly squeezed so the baby does not have to suck so hard.
It may help to use a "3 second sip" strategy where three seconds of milk are given and then the child swallows this before attempting more. This works especially well when the child progresses onto a feeder cup. In older children, some have shown that they can drink better through a straw as they have more control. If fluid comes down their nose discuss this with a Speech and Language Therapist.
Progression to SolidsLook for tongue movements whilst your child is eating. If you are worried about the ability your child has to move food round their mouth with their tongue, speak to your speech and language therapist (or get a referral if you haven't got one) they will be able to suggest simple exercises to help movements.
EmptyingMany children who have a 22q11.2 deletion suffer from constipation or "delayed emptying". This has a huge impact on the amount of food intake - if it isn't coming out there's no room for more to come in! Consult your paediatrician or GP for medication such as lactulose which works within the body to soften stools and does not act as an irritant to the bowel itself.
Menu of the Day!To assist in weight gain in the early months, make sure you have a referral to a dietician who can recommend feeding supplements like Calogen and Maxijoule, which are available on prescription and mixed in with normal formula milk and/or water and meals.
Your Dietician can also suggest recipes for high calorie, high protein meals.
Many children with DiGeorge Syndrome/VCFS are very selective with their food. This can sometimes be because they have learned how to manage that particular consistency or texture.
Always make sure that the consistency of food is matched to your child's level of oral movement. Chewing can be encouraged by adding small pieces of broccoli or carrot etc. that is "overdone" and very soft - this will enable your child to squash down the piece without it being too difficult.
Boosting Calorie intake
- Add butter or full fat margarine to everything possible.
- Add grated cheese (full fat) to vegetables, pasta dishes etc.
- Add formula milk to potato, vegetable and pasta dishes and also scrambled egg
- Spread margarine or butter liberally when giving bread or toast fingers - add cheese spreads, chocolate spreads, jam etc.
- Encourage full fat yoghurt and fromage frais as these are high in calories and protein.
- Try and offer milk wherever possible instead of juice, as it contains more calories and nutrition. You may however, be able to add the child's feeding supplement to his/her juice.
- If your baby/child dislikes milk, offer cheese, yoghurts or use more milk in cooking, instead for example try
- macaroni cheese and milky puddings.
Other Tips for surviving mealtimes...
- Don't let the child see you hitting you head against the kitchen wall!! Do it in another room!
- Use smaller bottles for milk feeding - it is very pleasing to see the contents of a 4oz bottle disappearing.
- Give small portions of food - more can always be offered if the meal is completed.
- Avoid drinks immediately before mealtimes.
- Try not to force the spoon into your child's mouth - they might associate feeding times with unpleasantness and conflict.
- Try "food play" in between mealtimes. Jelly, cooked spaghetti pasta, steamed vegetables - anything edible and safe for your child to put in his/her mouth can be played with - rather messy but makes food more fun and appealing.
- Make sure the food you offer is really tasty so when you say 'Mummy try some - mmmm lovely!' - you mean it!!
- All the usual rules still apply!
- Never leave your baby alone whilst feeding.
- Mealtimes should be fun!
- If a particular food is refused, try again as tastes change according to moods!
- Consider timing of meals - is baby/child too tired?
This leaflet has been compiled using information from:
- Children's Heart Federation
- Dietetic Department at Birmingham Children's Hospital
- Dr Peggy Ashcroft - Children's Hospital of Philadelphia.
- Parents' personal experience