Hi

My son is 2 years 10 months and is on omeprazole and domperidone (motilium). He has also taken infant gaviscon too and we give it him in a morning and before bed which seems to be enough. We trialled not giving it but it seems he needs it and just twice a day helps.

My doctor just wrote us a note with his script this time to say that he has changed from infant gaviscon to gaviscon advanced in view of his age. I see that it contains the same sodium alginate as the infant but also contains an antacid, I think. It is also a suspension, infant being the powder that we have to suspend in water.

I just get really stressed when anything changes as you all know what living on the knife edge of reflux is like. Previously only his hospital consultant has altered things like this and we haven't been with this gp long enough for me to feel totally happy so him doing this leaves me stressed!

It says on the label that this treatment will not be effective if little acid is produced in the stomach. Well omeprazole is a proton pump inhibitor so surely this gaviscon will not be effective?

What gaviscon do your children take at this age and older etc?

Perhaps you can reassure me the change is the right way to go? Or maybe it isn't? Help!!! I just get really stressed about life with reflux.

R

I've never come across this one. I used Gaviscon infant when the boys were little - although to be honest it never really worked for them and was a bit like spitting on a bush fire.

Then the older two used the gaviscon tablets when older - 4 up I think...

Can you contact the hospital paed? Maybe ask the pharmacist when you collect it - or get the pharmacist to query it with the GP - they are used to that too.

Hi

Thanks for your reply. I have just found this thread -

http://www2.everybody.co.nz/forum/ubbthreads.php?ubb=showflat&Number=1516554&page=1

in which Roz says it is not very useful as infant gaviscon thickens the whole contents whilst the liquid forms a raft which will not help when you are lying down as the raft will go to another part of the stomach and do nothing.

The gaviscon against all the odds as I know it doesn't help a lot of people, does seem to help my son. I thought it was probably not doing much hence why I took him off it for a while with the hospital consultant's blessing but I found he was being sick more and then I found that the two doses per day seemed to help immensely. I would have thought that the motilium and the losec would have been the key players which I think they are but it seems it does help him.


I did speak to the chemist who said I should speak to the hospital consultant if at all concerned. His view was that the doctor was following the guidelines in the BNF (I am in England so this is the book of medicines and doses etc) and that a consultant might very well have a different view so I think it is going to be the thing to do. I trust Roz's view and the fact that her child is or was still using it at 8 is telling. I have the same concerns over the fact that the liquid has a number of addtional things in (E numbers) which do not sit well although the liquid is sugar free in our case. Why oh why do people have to interfere! Fortunately I have enough infant gaviscon to last me a little time until I get it sorted out.

This sort of thing just causes me endless stress. I am stressed enough as I just don't think he is right at the moment and I hate the whole process of trying to get things sorted. I find the medical profession can have their list of symptoms and will run tests and things but then when that is exhausted that is it and any symptoms not accounted for by the above is then ignored. This has happened to us and actually things have been allowed to rumble on and he has ended up really ill. I wish they would just listen to me sometimes and do something to make things better for him. Sorry for the rant I am just having a bad time at the moment and this gaviscon thing has been the last straw!


Part of me thinks, especially after reading Roz's view of the liquid v. the powder is that I should just contact the doctor in a week and say he has been terrible on the liquid and ask for the infant to be represcribed to save all the hassle. I almost daren't even try it as I cannot cope with what might happen. He isn't right at the moment as it is - not sure if it is reflux or something else. I know this would be wrong to do though and perhaps I should just relay my fears. But then I am not sure they would be taken seriously and then I am back to the stresses of having to chase people about it all which I just don't have the strength to do! Arrrrrghhhhh!

R

Hugs and hang in there!
I really do understand about the stress and the medical profession ignoring things and letting them rumble on.

We struggled so hard with Thomas as a baby and even the paed would say she didn't know how we were getting him to grow but just keep doing it - ignoring the fact I was spending over 6 hours a day trying to feed the child and I had two other kids to care for!

Even at the moment T's surgeon is saying if the barium swallow doesn't show anything then he doesn't want to do anything else and we should just hope it's a phase and tube feed indefinitely - meanwhile I've got a kid who used to eat a full slice of bread for breakfast, 5 fish fingers for lunch and around 100g of whatever we were eating for dinner who has now gone to maybe 1 1/2 weetbix over a day, 3 brownies and 1000mls of Neocate tube fed.
Our response to the "We'll just leave it" is a resounding "Um NO!"

I'd try talking to the doctor about your concerns about the additives/differing actions and see if he'll change it, while at the same time call your consultant and get their advice as well so if all else fails you can say to the GP "Well, Mr X says...so please do that."

Hugs and hang in there!

Thank you so much for your support. I am sorry things are tough for you too - it is dreadful what goes on really. I know all about trying to feed a baby all day! I didn't move from my chair all day but was lucky that I don't have another child to care for. I am lucky that at a specialist children's hospital where his consultant is his care has been exemplary although it takes time to contact people and get responses etc but I accept that and I really cannot grumble. But our local team is terrible.

Anyway I shall take your advice and see how we go and let you know. It really helps to talk to people in a similar boat. I do hope you get a more satsifactory answer for Thomas. You really have been through quite enough with 3 long term refluxers without people ignoring the obvious in that he isn't eating. What are they thinking of? We were once in a similar sort of boat at our local hospital which ignored the obvious and wanted to do tests and kept feeding him milk down a tube (which had prviously been stopped as he was clearly so ill from it) when he was 6 months and were determined to get a stool sample. All that was coming out was thin liquid acid that they couldn't get a sample from and his breathing was getting worse and worse with oxygen desaturations all the time in his blood. Yet on they went trying to get the elusive sample, ignoring his breathing. In the end After 24 hours of no one listening and overnight team took it seriously and he was rushed into ICU at the specialist children's hospital on a ventilator as he has aspirated and had pneumonia! They weren't bothered about tests and samples - they went with the obvious and made his chest better. Then they investigated just to confirm what they guessed - reflux aspiration! I agree with you never mind what the barium swallow says - something needs to be done for your little boy!!! It sounds like you will keep fighting and you have given me a much needed bit of support to get me into the spirit again! Thank you

R

Hugs and hang in there!
Do let us know how it goes.

We're back with sachets! A huge relief.

I've been away for a week so left things as they were whilst away (taking the sachets and the other to consider). Whilst away he picked up some of my lunch of my plate in a cafe (involving wheat). During that meal he started having some throat clearing and suddenly stopped eating although he had had most of his lunch. A bit refluxy. Snack time (usual snack) induced further coughing and breathing issues but I am convinced it is reflux related and set off by whatever happened earlier. However he is under an allergy specialist too at the moment so I gave him some allergy med, ihhaler and the new gaviscon which I took out with me. Something helped a bit but he would not eat tea and he woke up that night coughing. I gave some inhaler which helped clear his way a bit and back to gaviscon sachets as I still had some left and he had a really peaceful night then and woke up no problem and ate breakfast next day. I think the gaviscon sachets do work for him and have done a few times recently druing coughing fits and therefore I rang his GP today outlining my concerns so he has been switched back :-) !!! I think there are too many things going on at the moment to be switching medicine that seems to help. I will be contacting his consultant soon I think to report that we are having continued respiratory symptoms (she is a resp specialist owing to his early surgery and so we need to take these seriously) and saying that I would like him looked at generally regarding his reflux. But he has a wheat challenge coming up soon so I think we should see what that yields. The allergy specialist is considering true allergy but I think it is what is discussed on crying over spilt milk. I think he gets refluxy and this in turn causes repiratory issues etc. I am hoping that we can just get him checked over and investigated more so that I am sure to be cutting out foods with a good purpose and also that I am not including things which are causing issues.

Thanks again for your support and taking the time to listen. Hoping things are going ok at your end.

R

Glad you are starting to untangle your medical mystery!

Sometimes it is trial and error to figure out what's what but I'm a firm believer in changing one thing at a time so you can assess what's happening.

Hope the wheat challenge - and the consultant visit all go well for you.

As for us - barium swallow on Friday thank goodness as Thomas is struggling a lot atm - tired, hurting, hard to eat.
Hopefully the barium will show the problem and we can move forwards quickly and get my happy, energetic, eating Thomas back!

Hope it goes well xx