When the time comes for weaning tube feeds because a child has finally begun to eat, many parents experience a variety of emotions including excitement, anxiety and pride. It has likely been a long journey and it seems like the end is finally within reach.
Some parents are overly eager to cut feeds and wind up cutting to much to fast, while others are extremely cautious and continue tube feeding the full amount long after the child is willing and able to eat by mouth.
First let me say that when weaning a child off tube feeds it is extremely important to follow the advice of your child’s doctor. The advice here is intended for informational purposes only and should not replace the advice of your child’s physician. Each child is different and a plan that works for one child may be a nightmare for another.
Now let’s talk about how you got to this point. Many tube fed children are able to be weaned off tube feeds because they are able to drink their formula. This is usually the fastest and easiest way to achieve a tube decrease because it can be done ounce for ounce. If for example your child receives 960cc of Pediasure by tube each day and starts drinking 120cc 2 times a day for a total of 240cc, you can decrease his tube feeds by exactly 240cc, and begin giving him 720cc through the tube. As time goes on and he is able to drink more, feeds can be further decreased by whatever amount he is now able to drink.
Here are the usual steps to weaning tube feeds:
a. Ensure your child is at a healthy weight. Before trying to decrease and wean tube feeds make sure his weight is stable and he has been following his curve on the growth chart reliably.
b. Be aware that once he begins the weaning process he may lose a little weight, so make sure he has some weight to spare. Talk to your child’s doctor or dietitian about what a safe weight would be for him and when you should be concerned.
c. Commit yourself to weighing you child 1 time per week for the next 2 months and reassess as needed.
d. Be open to the idea of increasing the feeds back to the original amount if he loses too much weight or if he stops drinking as planned. Look at weaning tube feeds as an experiment in the beginning and understand that your child may not be able to handle being off the feeding tube.
e. Feed your child at regular intervals. Since he is used to being tube fed he does not know the feeling of hunger and will probably not ask for food. It will take a while before he recognizes and is able to understand the feelings of hunger and fullness, so you will need to encourage meals with a set amount 3-4 hours apart.
f. Many children need the feeding tube decrease to happen before they start eating. If that is your child, it is very important you watch his weight very carefully as you cut feeds and encourage oral intake. While you cannot panic at the first sign of weight loss, if your child is small to begin with and you see him continuously losing weight for more then 1 month, he may not be ready and it may be time to take a step back. In this case it is especially important you work with your child's doctor and dietitian.
g. Manipulate feeds by moving towards a bolus schedule as possible.
Weaning tube feeds can be a challenging and exciting time for families of children who are on the feeding tube. By approaching it with cautious optimism your child can begin being weaned without any adverse affects. For guidance and suggestions on how to best wean your child off tube feeds, make an appointment with us.