5.01 For families with feeding difficulties and tube-feeding – English

5.02 While nearly all families have some kind of challenge relating to children’s eating, for some feeding is a more serious, ongoing or complex problem. There are lots of families who experience feeding difficulties like this.

5.03 The English section of the website has lots of information and experiences about families whose children need to feed through a plastic tube in order to get the nutrition they need.

Topics


5.06 Other parents might notice things about the way you feed your child, how she or he eats, or doesn’t eat! Lots of parents have told us that it is sometimes difficult when other parents don’t know or understand what is going on for you and your child. Sometimes other parents can say quite unhelpful or hurtful things.

5.06a “People around you might be like ‘oh you’re feeding too much, you just fed two minutes ago and you’re feeding them again’, but your child isn’t getting enough because of the feeding difficulty.”

Parent

5.07 “When I feed my child in front of other people, they think I am over doing it. They comment saying why are you feeding so much and that’s all what you do. I know that my child has not fed well but that would they comment.”

Parent

5.08 We asked Nepalese parents what would be most useful or supportive to say if you think someone else might be struggling with feeding:

5.09 “Giving advice to friends or family might not be well received. They might feel useless. I would feel more comfortable to encourage them to speak to their doctor or go to a children’s hospital for an assessment. But even then, some people don’t even like that suggestion so it can be hard to know what’s best to say.”

Parent

5.10 “Instead of talking behind our backs, it would be better to provide support or ask if there is anything we can do, or tell us how we can help.”

Parent

5.11 There are sections of the English website that could help here:

5.13 Feeding issues don’t just affect mealtimes. They can have an impact on lots of other things, including other everyday activities , making it harder to get out, meet friends, go to playgroups, or access support services. Sometimes it can all be a bit too much, and parents end up feeling trapped at home.

5.14 “It has been difficult. If we could take a child and they can feed themselves, it is much easier. But, if we have to carry food and make sure they eat, it becomes harder for parents. Feeding time is the first thing on your mind when planning a day out and since it can be so tedious, I would rather avoid going out. At least fruit like banana would be easier, but if they don’t eat even that, it is hard.”

Parent

5.15 But, the parents we spoke to all said going out was worth it, even if it was difficult or daunting. And that once you’ve done it a few times, it becomes easier and more normal.

5.16 “I still struggle because I still have feeding difficulty. However, I am happy that my child is developing well and is growing perfectly for her age. Yes, eating is an issue but everything else is fine.”

Parent

5.17 We spoke to lots of parents of children with complex feeding difficulties about getting out and about, and we have some useful parts of the English website:

5.18 We can’t go out! We need to go out!

5.19 Tips for tube-feeding while out of the house

5.21 This section is specifically for parents whose children have to feed through a tube (NG tube). It is in English, however if you need medical help in Nepalese then your doctor will be able to arrange an interpreter for you.

5.22 Helping other people understand tube-feeding

Managing how other people react to the tube

How to feel motivated and get out of the house with a tube-fed child

Tips for tube-feeding while out of the house

5.23 Here is a Real Story about Tube Feeding (names have been changed).