24 hour pH probe test - any experience?

[13lucky]

Hi there, I have just returned from a paediatric appt at the hospital with my dd who has hypotonia and hypermobility. She suffers from what the consultant thinks is reflux although this has not been confirmed. She has had a barium meal test but this hasn't proved anything. The paediatrician now wants to refer her to have this 24 hour PH probe test which involves putting a tube up her nostril into her oesophagus which needs to stay in place for 24 hours to test PH levels etc etc. This procedure sounds horrendous and fills me with dread! He said she wouldn't be sedated to put the tube in?? Does anyone have any experience of this please? Dd is nearly 8. Thank you in advance.

Yes. Ask them to use a numbing spray. It's a little uncomfortable. You wear a box on your body that records all the info from the probe. You have to stop taking reflux meds several days earlier (a week maybe???) to get it out of your system to get SN accurate reading. We had to stay at GOSH for my DD's ph probe study. It did come back that she was indeed refluxing badly and we were given an adjustment in her meds to combat that.

She takes an a prophylactic antibiotic as well as reflux meds because the reflux causes constant chest infections.

Thanks Sally...my main worry is when they actually put the tube in...I don't think she will tolerate it

Yes my DS has had it too but they inserted it while he was under general anaesthetic for something else. Could they consider light sedation?

The putting in the tube is a bit of a skill, so I suspect that the person doing it will hopefully be used to passing tubes. Where are you having it done? Is it a local hospital or a children's one?

She will probably be more irritated with having the tape on her cheek. Just check that the tube isn't too tight against the side of her nostril as that can be uncomfortable.

At the local hospital...the consultant said as an outpatient so we'd go in to have the tube put in and then be sent home for 24 hours and return the next day to have it taken out. What about sleeping though? Will she not pull it out in her sleep?! Thank you for your replies x

Yes she will be able to pull it out. It looks like a thick nasogastric tube. Reflux occurs quite often at night. If she wakes up coughing in the night, then it's most likely a reflux episode. If she gets a lot of chest infections more than three in a year, then reflux can often be the culprit. If your dd does experience that then see about getting a prophylactic antibiotic and sputum and lung function tests every 6-8 weeks to keep on top of it.

Thanks Sally - luckily my dd doesn't suffer chest infections or coughing in the night. Her symptoms are kept under control with lansoprozole and when she takes that the pain is almost totally eliminated...so I'm not sure about the necessity of putting her through this test. The paediatrician wants to do it as he wants to know 'what he is dealing with' because he is treating her for 'suspected reflux', nothing has been proven and because when she misses a dose, she gets the symptoms pretty quick depending on the type of food and he says that the symptoms shouldn't return as quickly as the drug takes a few days to wear off. Just feel uncertain about whether it's 'bad' enough to put her through the trauma of having the tube put in if she doesn't really need it...

Are you giving her Domperidone as well? I'm hesitant about it, as when my dd was small, Domperidone had too much of a motility effect on her digestive system! We are now on Lanzoprazole too, as Omeprazole was increased to the maximum safe dose and was starting to lose its effectiveness.

No, just lanzoprazole x