Anyone's baby had a 24 hr impedance probe study?

[Belle]

My 9 mth old has severe reflux, mostly under control but with some ongoing issues. We've held off on anything too invasive but our specialist is now very keen for us to have a camera study, which will involve a probe being put down (under anaesthetic) so that they can monitor his insides during a 'normal' 24 hours, i.e. carry on feeding as usual. this can happen at home though babies often pull the tubing out, so you can opt to stay at Kings. He is being sick still to a level which the doctor is not happy with , although it doesn't bother him, also he is a terrible night sleeper, often waking and doing this weird swallowing thing, like he has a bad taste in his mouth. Anyway I think I am convinced this procedure is the right move but wondered if anyone has had it/ had a child have it, so I know what it entails and what to expect? I know i can quiz the doctor more but layman's/parents' perspectives do help too.

[buggie]

Is it a pH study you've been offered?? Saw lots of these being done but over 10yrs ago when I worked on a children's ward so technology may have moved on a bit!

If it is the same test though, little 'un will have an NG tube passed - if you've ever seen anyone with a tube in their nose to have food with it's very similar.

It's uncomfortable to put in because the nose/throat are sensitive but once past the epiglottis it can't be felt (expect/prepare for resistance & tears but also trust the Nurses & Dr's - they'll advise you how to support him & help

them). Once in, if able to immediately distract - it isn't too uncomfortable. The tube connects to a small box that records all the data which is held in a small bag that you carry/the child can if their able/want to.

Hope this helps - like I said, it's been a fair few years so maybe different.

[Belle]

oh thanks buggie, i think he's doing ph but also putting a camera down...that's good advice about trusting the professionals when it comes to him getting upset etc. not quite sure how we'll manage the box/bag, but am sure t here will be a way!

[Kt4]

Hi

I've had both tests done (but as an adult and separately as done by different departments for adults).

- I've had the camera (gastroscope) a few times and have been sedated for it so have just woken up after it's all finished with no after effects.

- I had the pH study probe inserted whilst I was awake which was momentarily quite uncomfortable as it passes down the back of the nose but sounds like your littlun will have it passed whilst asleep so won't know about it. Once the tube was in place, I was initially aware of it at the back of my throat each time I swallowed but soon got used to it. I wasn't aware of any other part of the tube. They'll secure the tube well to your sons face and this really helps to stop it moving too much at the back of the throat as movement did make me gag. I had a mild sore throat for the rest of the day after it was removed but that may just have been me?

My experience/personal opinion is that the camera is not a problem and although the pH study was a bit annoying (and I was tempted to pull it out myself at one point), it was worth the discomfort to get a correct diagnosis and the treatment that follows has massively improved my quality of life as I found reflux sooo uncomfortable.

[Strawbs]

Belle - I was wondering if you went and ahead and had this done? Mini Strawbs now has to have this done as his reflux is off the charts at the moment so Dr Babu's office called me yesterday and they think this is the best next step.. Just wondering how you and your little one got on? x

[Belle]

Hi there,

didn't realise you were with Babu too:)

I saw your other post - do they think the vomiting is reflux then? sounds very extreme, poor you.

right, we had the impedance study at about 10.5 mths. In the end we got bumped from our initial appointment (which would have been endoscopy _+ ph probe so needed a general and to be done in theatre) - so ended up splitting the 2 and doing the ph prob first, which just requires a nurse at Kings to do it so no general or theatre etc. In the event the results were such that we didn't need the endoscopy too. This also meant didn't have to repeat the no eating ritual we'd gone through for the appt first time round when we were bumped - so hard with a little baby as of course they get so hungry/thirsty.

so the top line is - it was fine. It's distressing when they actually put it in, but that's over in a couple of minutes and you can wait outside (I did), the nurses are so, so used to doing this - the one I spoke to says she does 5 a week. Once in it doesn't bother them at all (or didn't T anyway). Then a quick x-ray to check it's in position. After that, although it LOOKS awful (i.e. baby with wire coming out of nose and lots of plasters to keep it stuck on!) it's like nothing has happened - mine carried on as normal - it was just a faff for me making sure the little bag was attached etc, I basically stayed in all afternoon the day we had it done and watched him like a hawk. He never even noticed it was there. Didn't try to pull it at any point. Was fine sleeping with it etc. the results were really helpful for us. They showed that actually he was very refluxy during the day (think he was 'moderate') when he's actually pretty happy, and not symptomatic at night, when he wakes up constantly which we had put down to reflux! Babu decided he didn't need further investigation as it was still 'moderate' rather than 'severe' but I found it v helpful.

Any questions, let me know.

[midivydale]

Just to say big big hugs to mini strawbs! We may have to go down that route also although Babu says to hold fire until dec if we can.

Let me know if you want a hand with anything?

Perhaps a reflux meet is in order?

Love c xxx

[Strawbs]

Belle - yep with Babu too but up until this point managed pretty well with medication so Ive only had to see him a couple of times.. They think his last serious illness a few weeks ago has for lack of the right words basically compromised how he is able to digest his food and caused slowed gastic emptying which is why he is refusing food from late afternoon onwards and purging every single thing in his body once we get to the night as he is full to the brim! My GP has faxed off a request to have him seen by the emergency team as he vomited all over her office last night and the gastro team called and said he needed the test asap so they are working on getting me an appt.. Could still take a couple of weeks though!!!

Caroline -- A reflux meet would be bloody excellent as I can normally keep myself in check with these things but this is really stressing me out.. Im back at work full time now though so it would have to be on a weekend so not sure how that fits as I know time with the other half is precious at the weekends..

x

[midivydale]

Hey, i would say emergency reflux meeting takes priority over other halves:)

I am available whenever you are free, it is a priority to help my fellow reflux mums keep their spirits up when needed. God knows you kept me sane in the early days.

Just let me know when you want to see me and also if i can help with anything.

Belle, you available too?

C xx

[Strawbs]

I could do an early breakfast up at the dish and the spoon on saturday if that suits? x

[midivydale]

Its a date x

[Strawbs]

perfect! x

[Belle]

Strawbs I forgot to mention in my post the most importnat (and I hope encouraging) thing: baby T has stopped being sick, pretty soon after turning 1. This considering he was still vomiting signficantly (averaging 10 times a day) up to 11.5ish months. So there is hope! We've even now stopped his meds and no ill-effects. Sleep is another matter but working on that one...

[Strawbs]

Thanks hon that is encouraging! Mini strawbs was on 30mg of omeprazole a day and babu reduced it to 10mg, a few days ago they told me to out it back up to 30 plus increase his domperidone dosage and frequency and fingers crossed we haven't had the nightly exorcist episode for three nights! We are back to normal reflux vomits which I can totally handle! I'm hoping this continues. Babu's office called yesterday and said they have decided he will have a barium(sp?) X-ray test before we do the 24 hour study so now I'm just waiting on an appt for that.. I'm meeting Caroline at 9am if you fancy it? X

[Belle]

Ah - I'm giving Mr belle a lie-in this morning as he's been up in the night loads on sleep training duty! But would love to catch up another time.

T had a barium too, so any questions about that just let me know.

x