Gastrostomy

[stressedoutmum]

Hi I am a newbie here and was wondering if anybody had any experience of their child being fitted with a gastrostomy.I have a severely autistic little boy he is 3 yrs old and refuses to eat and drink adequite amounts.At the momment he lives off a baby milk called Neocate but he does not take enough.His paedtrician has recommended a gastrostomy as all other options and therapies have been explored.I was just wondering if anybody could give me any advice good or bad about this surgery we are probably going to have to undertake.

by the way i am 33 yrs young ,married and live nr Edinburgh in Scotland UK

Diane

[Deester]

Just a thought, Have you explored the issue that it may be acid reflux.

I'm sure you must have if your talking surgery. Just wanted to make sure. My little guy has had it since he was a baby. He's almost 2.

Denise

[Lisa S]

Catherine never had a gastrostomy tube, although we did try the nasogastric tube with a kangaroo pump when she was younger as a means to try to help her gain weight. Has your doctor tried that yet? Catherine was born with several medical issues; however. There is a TOFS (Tracheal-Oesophageal Fistula) forum that has several parents of children with gastrostomy tubes. If you don't get enough answers here you might want to post your question there. Here is a link to them:

http://www.tofs.org.uk/discus/messages/6/136.html?1061117711

I completely agree with Deester' s suggestion to make sure your son does not have gastro-esophageal reflux before you agree to the surgery. The test is not pleasant, but it is important if it has not already been done.

Your son must have lots of food allergies if he is drinking Neocate. You might want to look at some food refusal threads in the lounge, such as the one Pompeyfan started. His son Walter is on a sensory diet similar to the one we used for Catherine when she was your son's and Walter's age. It might seem strange at first, but it helped Catherine begin to eat a variety of foods. I hope this helps. If you don't mind me asking, what other options and therapies have been tried for your son?
Lisa

[Lisa S]

Hello again,
I found this website with general information about the placement of a gastrostomy tube and thought it might be of interest to you. Here is a link:

http://pediatric.um-surgery.org/new_070198/new/Library/gastrostomytubeplmt.htm

Lisa