Eating

Some young people with CGD find it difficult to maintain their weight because of problems with their bowels. This can mean they grow slowly and are not as tall as their friends. It can help to have a few more calories. Adding high calorie foods to their diet, such as butter or cheese, can be sufficient. Some people, though, may need a little extra help from dietary supplements that usually come in the form of special drinks, available in fruit flavours or milkshakes. Your child’s doctor or dietician can prescribe these.

Sometimes young people with CGD know they need to eat more but find they can only manage small amounts or don’t feel hungry. Try to encourage them to eat small frequent meals rather than battle through one large meal, which might put them off altogether. Encourage them not to skip meals. You could try three small, manageable meals a day and snacks at break time, after school and before bed, such as plain biscuits, milky drinks, cereal, fruit or yoghurt.

People with CGD tend to use up their energy quicker than other people because their cells need it to help fight off infections. This means they need a bit more ‘fuel’. But when you’re young, being told you’ve got to eat more food may make you worry that you’ll put on weight. Fears about ‘getting fat’ are quite common in CGD-affected young people. Try to reassure them that they don’t have anything to worry about.

Firstly, if they eat a balanced diet, with lots of different foods, and fruit and vegetables, it’s very unlikely that they will put on too much weight.

Secondly, the reason they’re eating extra food is because their body needs it as fuel to ward off infection. They may be tempted to go on a diet, especially if they do start to put on some extra weight. Without the help of a doctor, nurse or dietician (a specialist in food and nutrition), this is definitely not a good idea. You can ask your doctor to refer the person you care for to a dietician at your local clinic or hospital. If you are concerned about their weight or food issues, talk to someone who can help, like their doctor or the CGD nurse.

Children and young people with CGD tend to be smaller than their friends. This can be for a number of reasons. The stomach may not digest food and absorb the goodness very effectively, so the body does not get the things it needs to grow. Much of their energy is used to fight off infection, rather than helping them to grow.  Puberty can also be delayed so teenagers with CGD appear much younger and smaller than their friends. Don’t worry – they may start growing later than their friends but will catch up with them eventually. Talk to the doctor or CGD nurse if you are concerned.

If they’re taken over a period of time, steroids, which are used to calm inflammatory infections, can also slow down a child’s growth, making them smaller than their friends. But when the doctor reduces or stops the course of steroids, normal development and growth can get going again. If the course of steroids is only a few days long, it won’t affect their growth. If you are anxious about this, talk to your doctor or phone the CGD nurse. They can reassure you and tell you about the options to ‘kick start’ growth, if necessary. They may recommend you take your child or the person with CGD that you care for to see a growth specialist (called an ‘endocrinologist’).

Children and young people with CGD can find it harder to absorb nutrients from their diet so giving them a standard vitamin and mineral supplement is a good idea.

A one-a-day vitamin and mineral supplement is all they will need, unless advised by their medical team. It’s not a good idea to take large amounts of any vitamin or mineral supplement as they can be harmful. Ask the doctor or a pharmacist for further advice.

Some people with CGD find it difficult to keep up their weight when they are ill and are conscious about how thin they are. If this is causing concern, it is possible for your child or person you care for to be fed by nasogastric (NG) tube for a while, whether they are in hospital or at home. A fine tube goes through the nose into the stomach and you can fill it with a special high calorie liquid food, containing nutrients, through a pump overnight.

There are also some special tubes which can be inserted directly into the stomach wall through a tiny hole (called a ‘gastrostomy’). This tube can stay in place for a long time without being changed and be kept hidden under clothes. At first the idea can be a bit off-putting, but people get used to it quickly and it makes them feel much better and more energetic.

Once they start to put on some weight and their body is getting better nourishment, their growth will probably start to improve. Some liquid diets exist now which may mean your child or person you care for with CGD doesn’t need a tube.

Below, 12-year-old Alex shares his story of having an NG tube:

Alex’s story

`When I was told that I was going to have an NG Tube put in I was not very pleased. The nurse put the tube in, and for about a week it felt strange. The first couple of days were the worst. It felt like raw spaghetti in my throat but I soon got used to it.

‘The thing I was mostly worried about was my appearance and what people would think of me, but sometimes I forgot it was there. For the first month, I felt out of place. I remember covering my face with my hands, making it look as if I was coughing. Soon though, I decided to forget about hiding away. I went out more and did not cover my face as much.

Learning to cope

‘Every month I had to have a new NG tube put in, and the first time this was done, I was very worried. I expected the worst but because I had got used to the old tube it did not feel like raw spaghetti. The only thing that was unusual was the tube going into my nose – it made my eyes water.

‘The reason the tube is in is to feed me overnight with a high calorie fluid. There is a tube which is attached to a pump and then the pump pumps the fluid through the tube, into my stomach. It is a bit uncomfortable and you can only really lie on one side, but you just have to cope.

‘When I started the NG tube feeding I weighed 25 kg. After five months of being fed on the tube, I am now 35.5 kg. The best thing about the tube is that it takes the pressure off me having to eat lots, but you must still eat.

‘It works much better if you drink some water when they put the tube in. The tube is long enough so that the end can be taped behind your ear. It’s much more comfortable like this. And when you’ve had an overnight feed, you will probably not be hungry in the morning, so don’t worry about that.’

This page has been approved by the Medical Advisory Panel.