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).
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 )
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.
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.
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...
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
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.