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Tube fed older children(15 Posts)
you could try the website for Patients on Intravenous and Nasogastric Nutrition Therapy
I can think of a good example where a child couldn't wait until having a PEG fitted and then absolutely loves it. This is because due to a deteriorating swallow reflex, eating was a real issue and hated having to. Once fitted the child knew that they could eat when they wanted to, but without any pressure as there was always a backup option.
I have a 9 year old who is tube fed, has been since 11 months of age, tube was put in because of failure to thrive etc, but after years of arguing we discovered he has a swallow issue, his is missing.
He is the only one in his school who is tube fed, siblings aren't either, but the tube is very much part of who he is, and we are lucky in as much as he accepts it's there, we've had all the questions about why, and have tried to explain it to him in terms that he can understand.
Do the family have access to Community Nurses or Enteral Feeding Nurses/support team who may be able to offer advice etc.
My son has an ASD dx too, he's an ex-prem so has a fair few issues left over from that, including a brain stem injury - hence the swallow issues.
We spent 4 years getting the so called professionals to admit/acknowledge that my son had a swallow issue, and that it wasn't just all in my head!! Anything thicker than custard and he choked and puked. So during that time they were working with us on getting him off the feeding tube, and trying to encourage him to eat orally, so we have never stopped him from eating. Although it was the first thing Gt Ormond Street wanted to do when they saw his swallow issues.
To be honest we didn't want him to miss out on the few things that he could eat sucessfully, gives him the whole food experience and how do you deny a child ice-cream etc. It's hearbreaking, it really isn't easy when you're faced with a child who watches everyone else stuffing cake and solids into their mouths and they can't eat them. We wanted him to experience normal as much as possible. For them to allow us to do "oral feeding" he had to remain pneumonia free for 6 months. Which he did, we tended to stick to the things that we knew he would manage, but he only takes very small amounts orally. But it has gotten better over the years and he now eats things that he couldn't eat 5 years ago - 5 years ago banana would make him throw up!
You can get thickners etc for liquids which are supposed to make the swallow safer, my son's at risk of aspiration on liquids which is the one thing he never had any problem swallowing!!
Are the family having problems getting others to accept the swallow issues?
There are 4 members of staff that I can think of off the top of my head that can tube feed my son, he's in special ed and every class he's gone through the staff have been taught how to feed him.
Hope this helps.
Not sure where you are, but have the family been referred to a feeding clinic? I know Gt Ormonds Street (The Wolfson Centre) run a clinic for children with dysphagia who don't have feeding tubes. I think there's also a programme that runs out of one of the hospitals in the Midlands - just not sure if it's Birmmingham or Manchester
I have 4 children and I have to admit that was our big bug bear was how can we deny all of them the opportunity to do these things with and around food - My son loves baking although he can't eat the end result
When it comes to respite have they tried SSD?? Just hope your SSD is better than the one here
Try here this is a forum for parents of children with reflux, but there are an awful lot of tube fed kids on there
Sorry trying again
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