Anyone with experiences of gastrostomy?

[JoandMax]

Hi all,

My DS2, 11 months, has been NG tube fed since 3.5 months due to severe reflux and hypotonia - he lost a lot of weight, dehydrated etc, basically refused any liquid at all.

Since then his development has come on brilliantly, he can now crawl and sit and is generally a very happy baby except for feeding! We have been trying to wean for months but he still will only take a couple of teaspoons at best, orally he will drink around 30mls per feed, sometimes less.....

He had a repeat barium swallow a few weeks ago which showed his reflux had massively improved although he is still sick very easily and just as much as he always has been so bit confused by that!

Our SALT did a flouroscopy which showed his swallow was weak and not that effective so he is now on thick and easy and only completely smooth purees due to risk of aspiration.

We had seen a surgeon about fundoplication but not sure whether they will go ahead due to the results of the barium swallow. A gastrostomy has been talked about for a while

He was diagnosed with Prune Belly Syndrome at 6 months but this is now in debate due to how well he is doing (a whole other post!!!).

So, what are peoples experienecs of gastrostomys? Did you find they helped your child with solids? We are getting so much conflicting advice and information from our various doctors we're at a bit of a loss on what to do.

My DS2, now aged 18 months had gastrostomy fitted at 9 months old due to aspiration casuing severe chest infections and resulting in lung disease. He had NG tube from 8 weeks old and then when fluoroscopy showed silent aspiration, and reflux, he was booked in for fundo and Gastrostomy. Only the gastrostomy was done in the end, as barium swallow done day before showed improvement in reflux. It's the best thing we ever did. It definitely seemed to help him with solids. I guess it's easier to swallow without an NG tube in the throat. He's still not allowed any liquids, they all go down the gastrostomy, but he's making good progress with solids. Still not where most 18 month olds are with feeding, but we are moving forward. I found it easier to cope with as it's more private and no one needs to know it's there. And he can't pull it out! We were only in hospital overnight, and the whole process was much less of an ordeal than I had thought it might be. Good luck.

Thanks Hamleysmum, that's great to hear and what I was hoping for! I'm so glad your DS2 is doing well now