Gastrostomy support?

[TitsalinaBumSqoosh]

Hi, can anyone point me in the direction of a support group/thread for children/teens with a gastrostomy? I'm especially trying to get tips on supporting my child to accept that he has to have one and the aftercare and life with one.
He's 13 an had spent a war working so hard to gain weight and it's not worked, he has a health condition that makes it hard for him anyway but now he's in the 'danger' zone so his consultant says it has to happen. It's booked in for March and he's in bits.

We have a really great psychologist working with him.

Hi OP, not sure but does his condition have a support group, and are many children with his condition gastrostomy-fed? I get support from the charity which supports my son's condition - they have a facebook page.

There used to be a tube-feeding support thread on here but I have a feeling it was for parents of younger children.

My son has just had a gastrostomy removed after almost 10 years. It was a true life line for him. I agree support from others is really useful. Which aspects most bother him if you are happy to say?

Thanks for the reply, there are a few support groups but he has CF so he can't meet with other people with the condition but o have reached out to ask for support on there.

I think it's his age, he's worried about being even more different, about people seeing and his girlfriend dumping him, I know they're 13 so it's obviously not serious but it's a big worry for him.
Plus it's just another thing for him to deal with on top of all his other medical stuff.
I'm hoping after it's done and the pressure to eat has been removed he'll understand that it's a helpful thing. He finds it easier to burry his head in the sand then to look at the bigger picture which I think is normal for a 13yr old.

Your poor boy - yes I can see it must be hard to go through such a change at his age.

If it reassures you, after the initial healing period, we had very little trouble from the 'button'. My son changed to a Mickey button after about 6 months. Try and push for this sooner rather than later, as it is much more unobtrusive than a PEG.

Gosh I didn't know that about children with CF not meeting each other.

Sorry, I don't feel like I'm being very helpful - if you have any questions, ask me though! I do feel for your son and want to say it really won't be that bad, but obviously his worries are real. If his psychologist is good, then hopefully he can work through these with her/him.

Two tips on life with one - I cleaned my son's gastrostomy site every night with saline and tea tree oil and his doctor used to say how amazing it always looked. We had very little infection - maybe 2 or 3 in the 10 years.

I used to change the button every 3 months even though they say 3 - 6. It definitely got more sore to change, and more risk of infection if it was in longer than 4 months.

There is an eye cream which our community paediatric nurses used on overgranulation tissue called Maxitrol - maybe ask about this if it arises.

Also if you get the nutricia Flocare pump, there is a way to stop it beeping (for example in the middle of the night) when the feed is finished - it's on a hidden menu - google it! This made our nights so much easier, especially with other young children waking us up.

Any other questions, just ask xx

Ask to have a Mickey button immediately rather than a horrible dangling PEG tube. Buttons are tiny and neat and barely visible.