Enteral Nutrition

What is Enteral Nutrition?	This is an overall term used for naso-Gastric, naso-jejunal, or naso-duodenal, tube feeding, gastrostomy feeding or jejunostomy feeding.
Why is tube feeding necessary?	People are tube fed because they can not eat enough ordinery food to get the nutrition they need. In Costello Syndrome this is because of the feeding issued related to the syndrome. Most, though not all children with Costello Syndrome are fed with a tube in there early years.
Where does the feed go?	The feed passes through the tube directly into the stomach or jejunum (part of the small intestine). The tube may be passed through the nose straight into the stomach. In the case of long term feeding a tube is often passed through the abdominal wall into the stomach or jejunum.
Is enteral food the same as ordinary food?	The commercially prepared liquid formulas may not look like ordinary food, but they do contain the same nutrients that are present in regular food. They are a fully ballanced feed containing proteins, carbohydrates, fats, vitamins, minerals and fluids. Some newer feeds even contain fibre.
When are the feeds given?	Different people have different needs for enteral feeding. Some children are fed continuously overnight. Others are fed at intervals throught the day. While others use a combination of both methods.
how is it done?	This will vary some people use a feeding pump to regulate the drip rate. intermittent feeding can be done using a pump while for bolus feeding, syringes or special containers can be used.
How will others rect to the feeding tube?	If your child has a naso-gastric tube it will be noticable and you may feel that you have to explain to others what the tube is for. If the feeding is by gastrostomy or jejunostomy tube this will not be seen under clothing.
How will it effect your family and friends?	>As with all aspects of Costello Syndrome Support from family and friends can help to make all the difference. Once nutrition issues are resolved it becomes less of a worry, and parents can then concentrate on all of the other needs and issues that need to be addressed. Make time to discuss the issues that the feeding tube presents, and try not to feel guilty about not oral feeding, or breast feeding of your infant.

Can I get the tube wet?	If you are using a naso-gastric tube this is not a problem. If feeding by gastrostomy there is also nothing to prevent bathing, showering or swimming, as long as the exit site is well heald, the skin is in good condition and the tube is capped or clamped off.
Can we go on holiday?	Everyone need a holiday, and tube feeding should not prevent your family from travelling. Holidays at home or abroad may need some special organisation, but this should not deter you from going away. In some cases the feed company will even deliver supplies to your holiday address.
How will we cope?	You ability to cope with tube feeding will supprise you. After you have discussed your childs needs with your doctors, dietician or nurse you will have the confidence you need. Remember that nearly all parents feel anxious and frightened when they are faced with the prospect of tube feeding for the first time.
Will my child ever eat or drink?	Yes, and yes. As with all aspects of Costello Syndrome, eating and drinking will happen in time. As feeding is one of the most difficult issues relating to Costello syndrome. It is importent to take time and introduce solid foods in a stress free way. It may take a few years, but it will happen.
Will my child feel hungry or thirsty?	As the food is going into the stomach, your child should not fel hunger. However it is worth remembering that most children do not feel any hunger in the early years anyway. This makes the feeding issues more difficult to resolve. In hot weather the body looses more body water through sweat which may increase the thirst, so try and give extra water, either by the tube, or if possibe by mouth. >
What should we do if we have any problems?	Occasionally problems may well arise with enteral feeding. these are unlikely to be serious and you will be taught how to deal with most of them during your training. However, if you are worried then contact your doctor, nurse or a member of the nutrition theam who are all there to help you.