help help help feeding tube related

[OpheliasWeepingWillow]

My dd (4) has been refusing her g-tube feeds this week, saying it hurts. Clearly she can't refuse or she'll starve (sole source nutrition) so what do I do? It looks fine - no oozing, crusting, just slight redness.

Am actually freaking out as she refused feeds at nursery last week as well :-(

Dr can't find anything wrong. Any ideas? I just had to basically sit on her to hook up her extension but then she was fine. This is miserable.

[winningticketholder]

Poor kid and poor you. If you are sure the placement is good and it really isn't uncomfortable then maybe you could give her some "magic cream" to put on her skin before connecting to see if she will calm down with a bit of placebo and self control over the situation. If she is old enough to refuse then she is old enough to be given a little control over the situation.

How long has she had the tube? They can take months for the wound to settle down and heal properly, maybe it does feel tender or she knocked it and got a fright? Can you slow the feed down at all if it is her tummy filling up that is uncomfortable? Does she have a favourite cartoon or ipad game she is only allowed to have for duration of feeds?

bensmedibear.com/shop/ do teddy bears with tubes fitted where you want, may help so she can get used to the tube on the bear until she is happy with her own?

Sorry that's all I can think of right now and all based on fear issues not pain issues, the fact is if the tube is new it may well be uncomfortable an would keep getting it checked just in case.

[winningticketholder]

Also obviously keep an eye out for signs of dehydration and if in any doubt take her to hospital where she will maybe have the option of an NG tube short term?

[OpheliasWeepingWillow]

Thank you for replying! She's had it two years and has never done this. So worried about nursery and also why it hurts! I've checked the balloon, everything seems fine.

Am in the US. If it happens tomorrow I'm going to take her to the children's hospital A&E as it's bad enough she doesn't eat let alone allow me to touch her feeding tube / button.

[JsOtherHalf]

Does this help at all?

www.gosh.nhs.uk/health-professionals/clinical-guidelines/gastrostomy-management

[OpheliasWeepingWillow]

It does kind of but I think the main problem now is my own anxiety surrounding her refusal. It's bringing back all the horror of the first year of her life - feeding refusal and weight loss. And my husband is going away Monday for weeks which means I need to make decisions and care, which gives me the fear.

Anyway, am going to call her surgeon and make sure nothing weird is going on inside her stomach and find a therapist for me (!)

[GRW]

When did she last have the button changed? Sometimes if children have put on weight they can become too tight which can cause pain. If it feels tight especially when she is sitting up that could be the problem. A community nurse can measure the tract to check, and then order a button with a longer shaft length if needed. I hope it will be sorted soon.

[OpheliasWeepingWillow]

Thanks

We changed it just the other day but I think the actual act of changing it really traumatized her - she finds it very uncomfortable