Helping your child to feed and thrive
Some children with ChILD may find it difficult to gain or maintain their weight. This may be because they are using up extra energy to breathe and be active.
Children with ChILD often need more calories because of their increased breathing rate and this means they have to eat more than healthy children. When weight gain is good, then your child is likely to be in relatively good health.
Weight loss and poor growth are serious warning signs of a significant underlying problem and you must talk to your doctor.
All children with ChILD need to be regularly measured (weight and height) and the results plotted on a growth chart. Ask to be shown this at every visit. You may need the support of a dietician to calculate the required intake of calories your child needs if their growth is inadequate.
If your child becomes too weak to eat the required amount of food by themselves or they find it too difficult to take the amount of calories required by mouth, then they can usually be helped by using a special feeding tube that goes into the stomach. Usually the use of these tubes is only needed for a short while but sometimes they can be required permanently. Some medications can be given through the tube as well.
There are two main ways of inserting these feeding tubes:
- Nasogastric (NG): a soft, thin plastic tube which is passed via the nose down through the food pipe into the stomach. It is kept in place with a plaster on the cheek. Although the insertion of the tube is uncomfortable, it is not painful and does not require sedation (anaesthetic). Children usually become used to the tube in a very short time and it does not interfere with normal eating. Supplementary feeds can be given at set points throughout the day or continuously over several hours. Feeding tubes need to be changed every 3-6 weeks and you will be taught how to insert the tube by an expert.
- Percutaneous Endoscopic Gastrostomy (PEG): this feeding tube is inserted directly into the stomach through a small cut made into the abdomen. Small protective plates on either side of the cut help pin the tube in position. This requires a general anaesthetic and is usually a very safe procedure. It requires daily washing with water, drying and gently rotating. As it is hidden under clothes it avoids the attention of other children. Children with PEGs are able to swim, bath, participate in sport and need to be encouraged to continue eating independently. When the PEG is no longer needed it can be taken out easily.
- Any child with a significantly weakened immune system has an increased risk of infection. This includes risk of infection transmitted by food.
- Do not leave food that requires cooling at room temperature
- Meat, processed meat (sausages etc), seafood and dairy products should be stored in the fridge
- Raw meat must be cooked completely through and either eaten on day of purchase or promptly cooled for eating later
- Only use fresh eggs and cook them completely (egg white and yolk must not be "runny")
- Slightly mouldy food products must be disposed of. Heating may kill the moulds but does not remove the toxins
- Do not leave warm food out - eat it freshly cooked or store quickly (in less than 2 hours) in the fridge after cooking. Leftovers in the fridge need to be heated through completely before eating.
Personal hygiene recommendations:
- Wash hands before and during food preparation (especially raw meat, seafood and eggs)
- Clean work surfaces frequently
- Strictly separate working equipment e.g. cutlery, bowls, cutting boards) when preparing raw meat, eggs, salad etc., for other family members
- Do not use wooden boards for food preparation or as a replacement for plates. Plastic, stone or porcelain boards are acceptable alternatives.
- Dishcloths, sponges, brushes and tea towels used for washing and drying dishes need to be dried and changed often