endoscopies and ph studies - any experiences?

[hazeyjane]

Ds has been referred for an endoscopy, and possibly a ph study (they would be done under general anaesthetic at the same time), due to his reflux

He has additional needs and any sort of medical procedure is a nightmare for him.

Dh feels it will be too much for him, and I am not sure whether the potential outcomes are worth the anxiety and upset it will cause him.

His reflux has been ongoing since babyhood, improved for a while, then took a turn for the worse and at the moment seems to be improving again. He takes 22mg of Lansoprazole daily.

He has also been referred for a barium swallow and a transit marker study - as well as reflux he also has chronic constipation and needs medication to go regularly - at the moment we juggle around Pico sulphate and movicol in order for him to poo daily.

Any experiences or thoughts would be helpful.

My son had endoscopy/colonoscopy/barium swallow at age 5 or 6. It wasn't easy. Your son isn't having a colonoscopy i take it? That wasn't fun - involved drinking a laxative and pooing until he passed clear water - you can imagine... overnight stay, waking up all the time with the runs. Plus he had to be on a drip because of another medical condition.
The barium swallow wasn't easy either as he needed to drink a lot of liquid which he hated (he's also had a lot of medical intervention and finds these things a nightmare to cope with). He drank loads, but not all the fluid and we were told that the results weren't conclusive because of that. All up, it wasn't useful information for us to be honest. It's so hard though, because you want to know what's going on inside without it being a fishing expedition at the expense of your child's wellbeing. x

Thankyou Mrs.

At the moment the only thing that is making me think we should go ahead is the thought that something could be going on and we can't see it. Ds's wonky pain threshold could disguise things that are going on inside.

Interestingly, I posted on the Facebook page that is for the genetic condition he has, and one person said their son had a thing called allergic oesophagus - which is something I had never heard of, so things like that may be something to consider. I will try and contact his paediatrician, but that is proving impossible thanks to big Virgincare switch over here (and ensuing balls ups!!)

Found you op. As you read my experiences of this on my thread, my ds was only a baby when he had all that done so I can’t commebt on it in an older child BUT i do have another dc with additional needs so I completely understand about pain thresholds and possible issues around masking. The one thing I will say is that they are happy to do this under a GA then I think you should definitely have them done. As you say, he could be masking a potential problem.

With regards to the barium, I can see, as the other poster said, how it could be pretty awful for an older child that isn’t in nappies etc and that would remember it and become distressed..

Can you have the first part of your post done under the GA and wait for the results to then decide if you want to proceed with the barium?

Hi hazeyjane,

My son had what they called a "24 hour pH probe" test when he was about 1 I think, and also a barium 'swallow' though he had an NG tube at the time, so the thick white clay-type stuff (barium?) went through his tube, he didn't actually have to swallow it.

The pH probe thing was a very thin tube, much thinner than his ng tube, which they put down his nostril and the end of the tube sits in the oesophagus I think and measures pH values for 24 hours. When we had it done (must have been about 2008), it was attached to a walkman sized box at the end - it's possibly smaller now.

They surprised me by putting it in the same nostril as his ng tube but, like the ng, it didn't bother him once it was placed. It is a bit unpleasant having it placed though - presumably they are going to place it under GA for your son?

Can you find out very specifically what yours son's docs are looking for, and what they intend to do if they find it, so you have some idea of how important it could be?

Good luck with your decision.

Tricky.
But the nhs does not suggest these invasive procedures for nothing.
What exactly is it your dh struggles with?
The procedure itself (he'll be under us though right?)
The prep?
The worry beforehand?
The hospital environment?
I've had all 3 and none were under GA (sadly!)
The baruim swallow was fine if a bit weird...the stuff is very thick and chalky but nit too bad. If he currently uses gaviscon ir similat its not too disimilar. The oddest thing was the poo afterwards that are white and don't flush away! 😁
The endoscopy and ph testing aren't pleasant tbh.
It's great he is being offered a GA although obv that's means a longer day patient stay?
I would urge him to go through with it...would a relaxant from the gp help?
Diazepam or similar?

Ah
Ds not dh!
How old is he?

My daughter had these done ( on more than one occasion between the ages of 1-5 ) due to reflux, oesophageal structure and dysphagia.
In my experience the siting of the ng type tube ( probe) under GA wasn't the problem- it was the fact that dd was fab at pulling it out. But I'm sure your ds won't be such a pickle.
I don't think the barium swallow is too invasive- ?

I would absolutely advocate getting it done, as, as you say there is no other way to see what is going on in there x

My daughter has had a lot of tests done since the age of 2. She is now 7. She finds everything extremely traumatic so all procedures are a battle. She had last month a range of procedures under general anaesthetic, this included an endoscopy and a ph study. This was a clip placed on the oesophagus and she had to keep a box nearby to record the results. BRAVO the test was called. She had a barium swallow when she was 5 and she really struggled to drink the prep. Took around 30 minutes of coaching and bribery!

We hate seeing her go through all this, especially as it causes so much upset but her consultant and professor want it done. I'm sure it wouldn't be advised if not needed.

Please read this:

www.theguardian.com/uk-news/2018/apr/14/patients-at-risk-aggressive-treatment-great-ormond-street

This has been a long time coming.

OP - my 2 year old has an endoscopy under GA in a few weeks and I like to think that the outcome/knowledge will outweigh the risk/downside of doing it...

If you have more questions then do ask the consultant before going ahead.

Can you meet with someone to book someone (playworker type role) to help with the additional needs/concerns on the day?

@mayhemensues - I just wondered if you could give any more wisdom on your endoscopy experience, my 2 DD has Dysphagia, which give chest problems and is having it to look for structural problems, any wisdom or tips for the day would be welcome.

Ah, fucking hell. Ds booked in for next Thurs, and just read that article. Feel sick with worry.

Also received preparation instructions - no food for whole day before, I can't see how this is going to work.

Hazy Jane - can you delay it for 6 months or so?

We were told we would be able to if we wanted to, do you have another consultant appointment coming that you can talk about it?

We are thinking of delaying now as we were told that the camera down her throat will be a Day case & it was explained quite low key. But just had the Pre op discussion and have been told she will need to be in HDU overnight as it is so risky- so feels different now & we can't see that is worth it.

Watching the GOSH documentary now-

We have been told a day case - for upper and lower endoscopies, happening first thing and home in the afternoon!

I think we may say no to the ph study though (as ds will struggle with the tube up his nose and then trying to get him to go back in the day after for the tube to be removed will be very hard)

Both his GP and one of his paediatricians think on balance it is worth it. Dh is going to talk to the gastro consultant this afternoon, at the moment it has all been up to me and I am struggling a bit to be honest.

Whole thing made a lot worse by hearing on Monday that ds will have to have a minor heart op in the next year or so.

It's shit really.

This is really disturbing. Without going into detail - I had made a complaint regarding around our son's colonoscopy/endoscopy at another hospital with consultants who cross over with GOSH. I think the problem is wider.

I'm so sorry about all you're going through Hazey. Dealing with multiple medical issues is very hard. I understand.

DS2 had severe reflux with projectile vomit and apnea episode. He was also on Lanzoprazole which didn't really make him better but when he wasn't having it he was worse IYSWIM.

He had the ultrasound scan done right two seconds after being fed and you could see the milk going down and back up.

They told me his stomach wasn't yet in the right place, looking more like a potato than a pear (their words) .

Because of the several episodes of vomit causing infections in lungs and ears, he had several courses of antibiotics in his first year of life and this combined to the pump inhibitor has been discovered to be the cause of his gastro issues now that he is 11 and his allergies and asthma. Basically, his gut bacteria has been destroyed several times and altered by medication.

To enable you to make a decision, you need to consider the benefit of the procedure. If it is only to confirm he has reflux, no need. Do they have an hypothesis they want to verify which would then imply a certain type of action?
You need to ask why they are doing these procedures for and what would the next steps be.

How old is your son? my son got better around 15 months and absolutely pain free at 3. He still has gut issues and terrible allergies, we are trying to target these two with diet.

Update

We had the procedures on Thurs - prep for colonoscopy was really hard, very little sleep on Weds night. Procedure took a lot longer than expected due to some complications. Dr's in 2 minds as to whether ds should stay in, but finally left at 8 (had arrived at 7am). Ph study was a nightmare - ds very reluctant to keep wire in, but we managed it, and dh and I removed the wire ourselves today (as going back to hospital would have been extremely difficult for ds)

However, despite all this, very glad we went through with it, as there were some findings, which have stumped the Drs, which could be the cause of some of ds's difficulties, and will definitely need further investigation.

Now it is done, and we have the worry of what it all means.

Thank you for coming back and updating. Sorry it was so distressing . Fingers crossed for the future