ph Test Reliability

[Anonymous]

Alex (22 months) had a ph study done last month because the ped wasn’t convinced that he was still refluxing – the ped thinks Alex should be grown out of it by now. Even though I can hear him wet burping all day long…

Anyway, he was off his PPI for 5 days prior to the study and reduced his formula intake significantly as each day off the meds passed. By the time he had the ph study he was nearing dehydration and I was fighting to get him to take formula and the 24 hours of the test he only drank maybe 1/4 (or even less) of his usual intake.

We did manage to keep the probe in for 24 hours (we had to bandage his hands) and the test showed 130 episodes of reflux, the longest being 24 minutes in duration, ph of 9.1. This is apparently only moderate reflux and the pediatrician did not recommend any changes in Alex’s meds or any further tests for reflux related problems. (He did do a battery of blood/feces tests though to see if there were any other problems.)

The problem that I have with this test is that his reflux would have significantly reduced by the time he had the ph test so much as to seriously skew the results. When Alex is drinking 8 to 10 bottles of formula throughout the day and night he still arches his back and turns his head, he still wakes up screaming, after a few bites of solid foods he doesn’t want anymore…

Ok, so maybe his reflux is a LOT worse than the test showed, I understand that doesn’t necessarily mean that there is any further treatment that he should undergo but I don’t understand how this can be used as a reliable diagnostic tool???

Also, does anyone know, if the test had showed a more accurate depiction of his reflux (such as on the “severe” level) what would the next step be for the ped to take?

The ped insists that Alex’s PPI is high enough to prevent any internal scarring or long term damage even though he is still refluxing so much. Anyone agree?

Sorry this is so rambling…..I’m tired….he’s not sleeping well at all right now….

Thanks for any input or experience anyone may have.

[Anonymous]

Darla, I just saw a new doc and asked about a pH probe for Hailey. He said that he didn’t want to do it, because they often can be so uncomfortable from being off the PPI (in combination with the discomfort from the probe) that they won’t eat, and if they won’t eat, then the results won’t be accurate. He had some strange analogies for procedures (wierd), but he said it was like trying to catch fish without bait: you might get some that surface, but you’ll probably miss a whole bunch that would have been seen if you offered food. (I know it sounds odd, but I got the point).

Sorry that your son is still suffering so much. I am so fearful that this is going to Hailey’s future as well. What do they plan to do to help him. I hope that he finds some relief soon.

[Anonymous]

what was his overall percentage of reflux? how many prolonged episodes of reflux did he have? the percentage of reflux is more significant than the number of episodes. did you also have an endoscopy done at the same time? prolonged episodes of reflux are more likely to cause dmage. i don’t understand what scale they were using to measure ph—-when sylvia had her ph probe anything below 4.0 was acidic, above 4.0 was not. sylvia only had 97 episodes of reflux, but her overall % was almost 25%. her longest episode was 44 minutes when she was sleeping. because she had an endoscopy, we were able to tell that she was getting a significant amount of damage, even on prevacid and carafate.

i don’t know how signigicant the fact that he was eating less is. sylvia seemed to be having a pretty good day when she had her ph probe, but i could watch the monitor and see that she was refluxing and she didn’t even flinch—and this was with an ulcerated esophagus and no meds.

did you ask for a copy of the ph probe results? did you get to see the actual graph?

[Anonymous]

Lori, I’d have to agree with your doc! I think the test isn’t that useful if the kid is going to cut back so drastically on their intake. But then Christine’s daughter didn’t cut back on her food even though she was in pretty bad shape so how can you predict what they will do till you go through with the test? So far no more recommendations for any further treatment – no one seems to think there is any problem serious enough to warrant it!!!

Christine, thanks so much for the questions/info. I did see the ph graph. I can’t remember how many of the episodes were over 4 mins long, they did tell us but I just don’t recall. I was too distracted by the fact that the doc giving us the results wasn’t concerned at all about Alex’s lack of intake! Yeah, I agree, the 9.1 doesn’t mean much to me either, I’ve just called the pediatrician and requested a copy of all the test results including the ph test so that will help me understand a little more in light of your comments.

The ped didn’t recommend an endoscopy. He doesn’t think Alex’s reflux is significant enough to warrant such an invasive test. One of our problems is that Alex is a BIG boy. He is tall and his weight is great and always has been and I think this stops the professionals from taking us seriously sometimes.

When you mentioned Sylvia’s ulcerated esophagus it made me remember – three times in the last couple of months Alex has had blood around his mouth an on his sheets in the morning. I’ve mentioned this to the doc and he brushed it aside.

Also, I thought that the the reason the reduced food intake matters so much is if there is no food in their stomach, there is no reflux! A drastic reduction in food/milk would significantly reduce the number of episodes and duration of episodes. The night that Alex had the probe on, he slept the entire night without waking – this was because he didn’t have any food on his stomach to reflux up! Normally he takes a couple of bottles before going to bed and one during the night, all that formula is there to reflux up and he wakes up screaming/arching his back – something he did not do during the ph test.

Thanks so much, ladies.

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