feeding tube and reflux
Submitted by busybusybusy on Thu, 01/26/2012 - 13:01.
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Hello,
It has been a while since I have posted anything partially due to relocation and my little one having a PEG inserted.
It has been 4 weeks since my little boy had his PEG inserted and the positives have been huge. He is happier, smiling, laughing, singing all the time. His nursery cannot believe the change in him. BUT the one downside has been that his reflux has come back with avengence. I was wondering if anyone else has had a similar outcome and what they have found that works.
We are giving him smaller, more frequent feeds using the pump. We have been told he is on the maximum amount of reflux medication so can't do anything there.
k x
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Hiya
Lovely to hear he is much happier in himself - that is wonderful. Sorry to hear about the reflux though. Is he in a lot of pain with it or is he vomiting a lot? Its very difficult when they are on maximum treatment and can't have anything more.
HOw did the move go? Have you had to move hospitals too?
Kx
Hi
The move went really well although it has taken my son a lot longer to settle than we thought. No we are still under GOSH as well as our local hospital. It is just a longer journey there now 3 hours instead of 45 minutes!
We are in the process of being referred to the feeding team at GOSH as well as seeing Dr. Shah, Rosan and Sue (physio).
Having spent the last three years with S having silent reflux he is now bringing it up and out!!!
Night feeds when he was on the pump for 4 hours was making the situation worse so we are now back to 4 hourly feeds.
Not sure if anyone else has had the same experience. We have been told the reflux is worse as he is having more liquid. But not sure.
k x
Hiya, that makes sense as my two had much worse reflux when they were hardly eating and mainly having milk. Also, both my boys reflux when they've drunk their Neocate. Problem is they have it near to bedtime and so they lie down soon after. I can't move it forward much as if its before dinner then they won't eat. Its a vicious circle!!
Its so tricky isn't it! Great to hear you are still being supported by GOSH. We've met Rosan and she was fantastic! I have to say, the advice we got from her was the best we have received re: feeding problems. Is S having anything by mouth or is he completely fed via the PEG?
when we moved, it took our eldest months to settle too. He asked to go home every day for a long long time and was very clingy. I do wonder if their experiences make them more senstive to big changes like moving house?
I hope the feeding team and Rosan can help.
Kx