Hi there,

My son 8mths is having a endoscopy and biopsy to check for a in 9 days time. They are checking to rule out a condition called EE as he has a mild dairy allergy but multiple food intolerances. The nurse told me today (only because i asked), that he should immediately stop taking his losec. I havent been sure if he still have reflux for a while now - some days im certain he does, others im just not sure. If he does.... is he going to become REALLY unsettled straight away or does it take a while for the losec to leave the system? Im freaking out a little as Im still trying new foods ever so slowly but I want to know if its the no losec or new foods if he becomes really unsettled.

Hi there. Just wondering what was the nurses reasoning for stopping the losec. Was it so that they would get a clearer picture/ truer result for the scope?
My son like yours had major aversion to breast and bottle feeding and has been intolerant to solids tried to date. He is a silent refluxer and it wasn't always obvious to me whether the reflux was his problem or not. Anyway when he went on losec he got diarreha so we had no choice but to stop it. We noticed very little difference in him when he came off the losec - however he was introduced to neocate at the same time which seemed to cure the reflux. So I guess in our case he was fine without losec on a neocate diet only but when solids were introduced he would of benefited from the reflux meds. I know how frustrating it is trying to do food trials when there are so many variables. Perhaps give him a few weeks to settle on the neocate without meds, before you introduce the next food. I wish you all the best for your scope. We haven't had one yet but in hindsight I think you are doing the right thing.

Hi
Yes, I think in your case the scope should be done off Losec. That way they can check for both oesophagitis from reflux as well as EE. I don't see much point in limiting foods though before the scope if you are looking for EE. To check for damage from reflux, it needs to be untreated at the time - so no Losec. To check for EE, it needs to be untreated at the time - that is no restricted diet. If he is on Losec and a restricted diet, and has no symptoms because of this then it isn't going to tell you anything. That is my opinion anyway. Would pay to check with whoever ordered the scope if they weren't clear.
Doing a scope on Losec, if reflux has been confirmed previously will tell you if the treatment is adequate.

As for what to expect off Losec, expect the worse and it might not be too bad. There is often a rebound acidity for the first week but not always.

Good luck.

Having just had a scope done on our girls to rule out all the same stuff, we were told by our immunologist to put the girls back on a "normal" diet for a couple of weeks before hand if possible, as it needs time for the body to show up EE reactions ... we stopped losec about a week before but this is normally done 2 weeks before (we were allowed an exemption due to having to do it with BOTH twins at the same time ....). The week was okish, but the next week after the gastroscopy was pretty horrid. The girls did their usual stop eating/drinking/sleeping etc, but it just took time for the oesphagitis to heal once they were back on losec and gaviscon. Definitely worth doing, in spite of the stress .... and we went private, and our gastro-paed told us that when they schedule the gastroscopy's they always put the youngest kids first thing in the morning, as they are less able to cope without food/bottles to drink compared with older children. So our girls were first up in the morning, which made that part of it manageable ...

One of our two started showing symptoms straight away when we stopped their losec and gaviscon, but the other one took a few days before we really noticed .... which is always the way it's been, in that one of our girls reacts quicker and therefore heals quicker, while the other is slower to react and slower to heal ....

Hi thanks so much for your replies i appreciate it and now have my head around the whole idea that I need to start introducing some more food or we will be putting him through the procedure for nothing!! I know he reacts really badly to pear and lamb so will give them a go - and perhaps introuduce a couple more new foods (have such a short time to do this in) as he has only really been living off 2 foods and neocate and breastfeeding.

Dolphin.... how did your girls get on? Did the scope confirm they had reflux (although by the sounds of it, very obvoius), and how about the EE, did they get the all clear for that? Great you were able to go in the morning. Blake needs to go to Starship at 12.00 but they said he wont be getting anything done til at least 1.30 and not to feed him after 7.30am (which will be torture im sure!!!!!!). Yeah I so wish we had medical insurance and were able to go private!

Hi Dolphin, interesting the different ways they respond. Just curious to know and hope you don't mind me asking. Do your specialists have an opinion on their differences? eg. do they think one of your daughters has a better chance of outgrowing her intolerances compared to the other. My son is very slow to react and very slow to heal also. I sometimes wonder whether that sort of reaction is any worse/better than an a immediate response.

The scope for both showed that they definitely had reflux oesphagitis in both upper and lower oesphagus, but none in the stomach or duodenum. So we know it's restricted to the valve at the top of the tummy not working, and not right through their entire guts. For the moment we've been given the all clear for EE, but since my girls only eat tiny (and I mean tiny) amounts of solids we can't rule it out completely. So either they have it and we are controlling it with their extremely restricted diet (lamb, rice, potato - a very recent addition) or they don't have it. Could be either. We're meeting up with the gastro-paed next week to see where to from here. The girls are on max losec for their weight, and a lot of gaviscon which controls it (providing we don't do any food trials) but when the girls are eating a total of about 100grams of solids in a day at the age of 21 months still ..... so will see what he has to say.

A barium swallow showed up that Jessica also has a lower oesphageal motility disorder, where the food/formula doesn't always get processed immediately through the valve at the top of the tummy (which it should do) so we know this is an ongoing problem still also. She's also having issues with constipation so we suspect that her whole gut isn't processing food quickly. So need to talk with him about that.

Our immunologist is confident that the girls will grow out of the majority of their intolerances by the time they hit school age. Seeing they've never shown up on any of the RAST tests he expects them to improve over time, and it's just a matter of us riding it out and keeping them stable till then weightwise (which is a major struggle again at the moment). Most of our specialists treat the girls reactions exactly the same, and put the faster/slower reaction time down to different sensitivity levels and gut motility. The gastro-paed has always treated the girls reflux and gut issues separately, which is why Jessica has had a barium swallow and Claire hasn't. Jessica has more obvious regurgitating while Claire has had major struggles with FTT - so different tests etc required at different times. Having said that they're at the age now where the chances they outgrow reflux are extremely small, so we need to look to the future and where we need to go long term ....

If the girls react immediately, then it's a major reaction and will take longer for their sensitivities to improve ....

Wow.... i truely take my hat off to you. Im finding it so hard with just the one (and hes only 8months) and you are going through all that with two bubs - it must be so exhausting! Sounds like the test was well worth it - its great you know where you are at now and i hope now they can get a plan of attack in place for you.

I also think Blake has a problem with the processing of the food - I've always thought it was more of a stomach / bowel issue (i have to give him 3 big bottles of water and brown sugar everyday to help him pass daily or else we are up ALL night). I hope the scope can either confirm or deny this. Today is day 2.5 without losec and hes just starting to pull funny faces and make choking sounds when he burps so Im think reflux may still be an issue, however hes gone down to sleep okay and isnt hugely unsettled yet so fingers crossed. I have eased up on my diet in preparation for the scope - I had half a banana this morning which i havent had since he was born and his eczema has flared right up and he scratching a lot so could be that. He has bad reactions to lamb and pear so I guess i need to give a teaspoon of that here and there in the next few days. Hate thinking of putting him through the pain but I guess it needs to be done for the scope.
Thanks for sharing your experience its helping me get my head around it heaps!!!!!!