My feed
Premium

Please
or
to access all these features

Here are some suggested organisations that offer expert advice on special needs.

SN children

DD's hi-tech reflux test: anyone else had?

13 replies

Arabica · 24/10/2008 13:46

DD is to have a 24-hr test at GOSH to see if she has silent reflux. It involves passing a NGT connected to some kind of electronic monitoring device. She has it fitted, then goes home and eats and drinks normally for the 24 hrs: she then returns to GOSH for the tube to be removed (if she hasn't already ripped it out herself). I can't remember what the technical name for the test is. Has anyone's LO had this and did they find the tube-fitting traumatic (she will need an X-ray as well).

OP posts:
Report
feelingbitbetter · 24/10/2008 16:15

no, sorry, but hope it all goes well for DD
(and isn't too stressful for you either

Report
thetracychainsawmassacre · 24/10/2008 16:19

IS IT ph probe?

Report
thetracychainsawmassacre · 24/10/2008 16:22

if it is dd had two the first one the pead put in in seconds the device you carry is a pain and you have to right down what she eats drinks and crys even

Report
Arabica · 24/10/2008 16:46

yes--have to carry device and write it all down but I don't mind that bit, just the tube and x-ray

OP posts:
Report
needmorecoffee · 24/10/2008 17:05

yup. dd had one a few weeks ago PH probe.
lady passed in the tube in 5 seconds, no fuss from dd, went for x-ray and then went home. Went back 24 hours later to have it out.

Report
Arabica · 25/10/2008 00:17

That's good news needmorecoffee! How did your LO tolerate the tube once it was in? And did you find the test helpful?
BTW, I alwaysneed more coffee (hence the name).

OP posts:
Report
needmorecoffee · 25/10/2008 09:50

she didn't even notice it BUT she has no hand function remember so couldn't of fiddled or pulled it out. Some kids do.
The test showed she had NO REFLUX so the paed who for years insisted all kids with CP have reflux and prescribed meds such as omeprazole and zantac that have nasty side effects was wrong wrong wrong. And I was right not to give them to her.
You can diagnose reflux without a PH Probe but so many disabled kids are parked on these meds without finding out for sure.
They did a video flouroscopy to check for silent aspiration as well. None of that either (so stick that in your pipe mister Pdoctor of doom )

Report
Arabica · 26/10/2008 00:50

Yes, we have been told about the video test but consultant is optimistic that this test will reveal no reflux and we won't need any other tests. DD was on omeprazole and (a) it didn't seem to improve the reflux she had in those days; and (b) it was a pain in the ass to administer, so I took the decision to stop it and she grew out of the reflux (at least I think she did!)
Glad your DD did not need any further testing but am a bit [hhmmm] at all those children left on supposed anti-reflux drugs.

OP posts:
Report
Arabica · 26/10/2008 00:51

I meant

OP posts:
Report
needmorecoffee · 26/10/2008 08:57

15 years ago when I had my other kids reflux was very very rare but all babies posseted or sicked up. They all did it. And they grew out of it.
Now it seems to be called 'reflux' and omeprazole and zantac are handed out like smarties with no PH probe done to actually check. And both drugs, like all drugs, have alist of unpleasant side effects.
It bugs me.

Report
Arabica · 26/10/2008 23:04

When DD was about 5 months, I queried why omeprazole was being prescribed without testing to see whether she actually had reflux.
Paed told me he felt all the tests offered by gastro team were too invasive and distressing for small babies, except in the most urgent cases...

OP posts:
Report
needmorecoffee · 27/10/2008 08:42

yeah, we were told that too and told all kids with CP have reflux. so not true. And dd had terrible crying on omeprazole so i took it (I do have terrible acid) and it causes nasty tummy pains on eating and a fuzzy head.
We had 6 months of eating hell due to that bloody unneccassary drug

Report
Arabica · 27/10/2008 23:59

I think we used it for three periods of about a month each. DD seemed as uncomfortable whether using it or not, so in the end we gave up. Our SALT (the one who specialises in swallowing) really rated it for some kids. But it does seem a bit on the over-prescribed side.

OP posts:
Report
Please create an account

To comment on this thread you need to create a Mumsnet account.