Severe reflux in premmie - now 9months corrected

[tatt]

Friend's baby is 1 year but as was very premature is only 9 months corrected. He is on various medications for reflux but they aren't working terribly well. He doesn't make a lot of noise (which is bothering my friend) and I suspect this is sore throats/ dmaged vocal chords from the acid damage. He's been discharged by most of his specialists as he's doing well apart from the reflux and is seeing a speech therapist for that.

So - I seem to be picking up suggestions from other posts that taking the meds at different times may help? Nestargel has been mentioned? I'm also wondering about suggesting cranial osteopathy.

They had nutramigen for a while (older brother was milk intolerant) but have gone back to a milk based formula. That surprised me a bit.

Anyone got any suggestions?

can only speak from experience

if I don't take my reflux meds at night, I wake up hoarse in the morning. Is he on omeprazole? Because I think that seems to be the most effective (long term) - or a variant of omeprazole. For example I have forgotten to take them at night for 2 nights and have been taking them in the morning and am hoarse today. Ds used to be the same till he outgrew it.

If he isn't milk intolerant or allergic, then probably no point continuing with the nutramigen tbh.

I would think he would still need to see the gastro paed to get the medication right for the reflux tbh, especially if it is affecting his throat.

Have they had a look down his throat with the special camera just to check that his lack of noise isn't something else? Think the ENT has to do this (it's one of those annoying cross over areas I find!)

no mention of the special camera so I don't think he's had it. Do they have it everywhere now? Poor boy has had so many problems that the emphasis has naturally been on his more life threatening problems, like heart surgery. However he is now doing remarkably well apart from the reflux.

I don't think omeprazole was one of the drugs she mentioned (think lansoprazole was the main one and maybe domperidone) but I was tired and we talked about a lot of things and I didn't take it all in.

Doesn't milk often make reflux worse? Milk intolerance being hard to identify would have thought it worth him staying on it for a while longer, especially with their family history. The older child only outgrew his milk problems about age 5.

I think by 1 year he'd probably have other signs of the intolerance though? Nutramigen worked wonders with mine but they had a definite allergy. I don't know if it's worth keeping him on it if he seems healthy in every other way but I guess that's a call for the consultant. Would think if his reflux gets worse, then they would have to revisit the decision.

Think lans much the same as omeprazole

if he's having trouble making a noise, they really should look at his throat. Though ask her to try giving the lanz at night and see what happens because I find that does solve my issue. I also know it is very hard to get the dose of those drugs right in children because of their weight changing all the time.

I have had great difficulty having this looked at tbh. The gastro will tell you it's an ENT issue. The ENT will look at it and tell you it's the gastro's problem to solve. It's actually a bit of a pita .

I don't know if they use the camera in children, I assume they must do. Elibean might be quite useful on this because her child had a floppy larynx so they must have had to look at that somehow so I wonder if they used a camera for that.

But they should rule out other causes too I would have thought.

how lovely that he's doing ok now. Must be such a relief for her!

I would agree with the other posters that care for this kind of issue is highly specialised.

However, if your friend is not already aware of it, I would give him/her details of BLISS, the charity for sick and premature babies. There is an excellent parents forum at www.blissmessageboard.org.uk. Ongoing issues/Older Prems are probably the best boards to post on and there are many parents there who have coped with severe reflux.

Thanks - gave her details of the BLISS boards right at the beginning of the roller coaster. It was lovely to see him crawling and even pulling himself up.

Given all the research going on now on how people respond to drugs differently maybe worth switching drugs even if they are supposed to act in a similar way? Something to discuss with their professional advisors anyway.

Will pass on the suggestion about night time meds. Thank you both.