Reflux in infants - advice Please

[Wanhope]

Sorry to resurrect this thread again, but I was hoping for a bit of advice from some of the reflux veterans I know are out there ...

Sadly for us, our four week-old daughter looks to have reflux, just like her older brother (maybe) did before her. In my son's case we went through the familiar route of trying all the various reflux meds, ending at omeprazole, before ultimately moving from BF to neocate, which either worked or just coincided with the point when his digestive system matured and things came right of their own accord. We never really figured out what the problem was, but a temporary cow's milk protein intolerance (CMPI) seemed the most likely problem.

Anyway, after a real deterioration in our daughter's feeding, we ended up at King's A&E yesterday where I was desperate to shortcut all the trial and error and wasted time and and just stop BF and move to neocate then and there. I recognise all of my daughter's symptoms from my son at the same age and so it seemed logical to conclude that the root problem would be CMPI, not reflux. Anyway, we were talked round by the consultant we saw, who persuaded us to persevere with BF while attempting to treat the problem as reflux first. We've been prescribed ranitidine as a starting point and I'm sceptical. There's been no obvious improvement yet (in fact, we've seen the reverse) and I'm just wondering whether others think there is likely to be soon or whether we should instead press to switch to omeprazole now? That way, if the full gamut of reflux meds prove not to work for us, we can hopefully just move on to neocate in the next week or so ... as opposed to months down the track.

What do others think? Should we stick with ranitidine for a bit first and, if so, how long? Has it worked for anyone else? Very, very grateful for any advice on this as (without wishing to sound too self-indulgent) very upset it's all happening again.

Many thanks in advance.

[midivydale]

Hey, no mother would ever sound self indulgent. Writing in a rush as in Sweden with my father who is ill but if it was me I would 100% want to go with neocate asap for the reasons that you describe in your post. Will write more tonight but just wanted to say go with your gut. I would want exactly the same thing if I were in your shoes. Bluedark who have posted on this thread and I had a similar conversation a few weeks back. Sorry for rushing x

[astrid83]

Fight for Omeprazole, insist on having at prescribed as it seems to be the only meds that works.

A friend of mine managed to continue BF as she went completely dairy free, i think she found it difficult to begin with but got used to it.

Which GP are you with? I've heard that The Gardens prescribe omeprazole quickly as they now it works, and always do poo sample for CMI. I nearly registered with them to get the right help, but managed to get our GP in Brockley to prescribe omeprazole which was the turn around for us.

[hellosailor]

It may well be that they don't let you switch to omeprazole until you've done the requisite amount of days trial with ranatadine - (2 weeks? from memory?)

We pressed to be changed but had to wait until we'd done the suggested amount of days with ranatadine (frustrating at the time but I guess it makes sense.)

Omeprazole has worked wonders for us but, I remember thinking on about day 7, it's just getting worse, it's not working, and then bang on day 8, it kicked in and everything changed, so sometimes I think they really do take a while to work even if they look like they're not going to.

Fingers crossed for you

x

[patt1980]

I just went through this too have a 3 year old who had severe reflux and CMPA who only improved first time round when moved onto neocate at 8 weeks and a 4 month old boy who also has cmpa and soy allergy (I went dairy free whilst pregnant this time but found out through a few slip ups and also wasn't being strict enough about soy as my daughter hadn't been as sensitive to that)and I pushed for neocate for him and it was the only thing that again sorted him out. It is very sad it happening again isn't it but at least you are armed with all information this time.

I just got my gp to prescribe neocate as I knew all the signs from last time and he'd dropped 3 centiles as he'd refuse to breastfeed and arch and scream so didn't actually bother going down the reflux meds route again as I was pretty convinced the reflux was again just a symptom of underlying allergy. I stated off mixed feeding with it but after a couple if weeks you could clearly see him in psi if i 'd breastfeed him so went fully onto neocate . Was again really sad to stop bf'ing but like last time seeing my baby transform into a happy smiley boy made me think was right decision for us.

I just had dietician appt at kings for him and she said there is a high incidence of siblings having same allergies and intolerances which I don't think is conveyed enough to you to be honest as I know it was the one thing I was so nervous about having my second.

Good luck and feel free to pm me as all very fresh in my mind only being a few months ago.

[Strawbs]

My son had reflux and needed Neocate. We were started on gaviscon and ranitadine and after a week it made no difference at all so were switched to omeprazole and it really helped. He was then on it for 16m along with domperidone(we finished this much earlier) and then grew out of his dairy allergy at 2.

My advice is to trust your instincts as you have been through this before. I think Omeprazole is a great drug (I am currently on it for chronic pregnancy heartburn) and if you feel the other drugs aren't working then raise holy hell til you get what you need for your baby. I am at the gardens and am very lucky that they prescribed it for me quite easily.

Good luck x

[Bluedark]

Dear all - I don't want to steer the conversation from Wanhope's question on reflux medication, however as it is relevant to this thread I wanted to ask another question. Regarding allergies, as an underlying cause of reflux, how are they spotted? I read above that a stool test for CMPI for example. I have gone non-dairy for few weeks and then challenged it and my daughter's reflux (we are on omeprazole) and refusal of breast was worse. So our GP has asked for blood tests for allergens for dairy, eggs and peanuts. Does that sound familiar? I understand if the tests are positive then she will have a clear allergy for these. If they are negative then she said we will continue to challenge my and her diet every 6 months or so. I am a bit confused as to how the allergy is identified? What if she is allergic to other things than these three things? What about the skin prick tests? We have given tubes of blood before for prolonged jaundice and it was not a pleasant experience

- I am worried about another blood test, to be honest. Appreciate your thoughts. Thanks all

[Wanhope]

Dear all,

Thanks so much for all of your responses to my post the other day -- I really appreciate your help. I think we are going to ditch the ranitidine as all it's resulted in is constipation (great; another problem!) and we weren't advised to stick with it for any specific length of time to gauge its effect before trying something else. So I'll trudge back to GP tomorrow to try to get omeprazole instead and will see how that goes before deciding whether we need to ultimately switch to neocate(which I suspect we will). None of that's ideal, but I do feel a bit obliged to stick with the reflux meds route first given that that's what we've been persuaded to try ...

Patt1980, I totally get what you mean about wanting to continue BFing if possible -- after our experience with our son, the idea of having a fat, contented, happily BF baby was one of the things that kept me going through all of my various pregnancy woes (hyperemesis etc.) second time round, so I'd also be really sad to stop if we had to move on to neocate as well. That said, I also don't want to continue at all costs because of a sentimental view of how I'd wanted it to be :(

Anyway, will post again if/when there's a positive update to report!

[patt1980]

Bluedark - not a complete expert on spotting allergies other then my experiences but often finding underlying one is a case of trial and error and challenges as you are doing. I think they blood test or skin prick (i think it is same thing they are testing for just depends on circumstances when to do either, guessing skin prick takes longer to get an appt as needs to be done in clinic at hosp) for the most likely allergens which are cow's milk protein, eggs and nuts as they would make up the majority of cases. However these would only show up an IGE mediated allergy (an antibody created by immune system in response to allergen) and a lot of cases are non- IGE mediated which means they will most likely grow out of them. For example I have always been allergic to nuts and skin prick tests show this and i won't outgrow it but my 3 year old with dairy allergy didn't ever get a reaction from skin prick test and is now showing signs of growing out of it when we do a challenge every few months.

Hope that helps. I also found this website really useful for info about Cow's milk allergy http://www.isitcowsmilkallergy.co.uk/

[Strawbs]

We had mini Strawbs tested by way of skin pricks as he had been diagnosed with a cows milk protein allergy, soya allergy and mango allergy, all of which came up negative on the skin prick tests so we were advised to reintroduce and he reacted very badly every time. At he age of 1 his allergies had him in a&e a few times. He grew out of all three allergies by the time he was 2 thankfully so maybe similar to Patt above as in it didn't know up as it wasn't an allergy for life. It can be very difficult to diagnose when dealing with allergis I agree especially in a baby who can't tell you what's wrong. X

[alieh]

If you really want to continue BFing and want advice about how to go dairy free, let me know. I had to do this for my son and once I got used to it and figured out the best alternatives it wasn't that bad. But I can also fully understand if you choose to switch to Neocate instead!

[Bluedark]

Dear all - thanks a lot for the responses and sharing experiences/knowledge...I think it is the desperate me hoping that there is a magical solution for identifying the cause her discomforts; as they continue despite reflux medication and a recent tongue tie snip. I think she definitely has CMA or CMPI but I believe she is also intolerant to soya and eggs (purely based on a flare of her back arching and refusing to feed after I eat these, maybe it is not the case at all but I don't know). Anyway.

Alieh - I have sent you a private message.

[stress_head]

Bump

[midivydale]

Hi former reflux mums, does any of you have toddlers who still at times experience reflux symptoms? My boy is now 3 and after a tummy bug we now seem to have a set back both in terms of foods he tolerates and reflux.

Anyone out there? Pleeease?

[midivydale]

Hi former reflux mums - are you still out there? Does any of you have toddlers who still at times experience reflux symptoms? My boy is now 3 and after a tummy bug we now seem to have a set back both in terms of foods he tolerates and reflux.

Anyone out there? Pleeease?

[Saffron]

So sorry to heat that midivydale! No personal experience of reflux with Little Saff, but we are all too familiar with tummy bugs. They are Little Saff's achilles heal. Infection (usually viral) of the gastric tract leads to delayed emptying of the stomach contents into the intestines. Food can stay in the stomach basically undigested for long periods of time. This can cause all kinds of havoc.

Sorry TMI ahead: I've seen bits of black olives make a reappearance in the vomit more than 24 hours after Little Saff ate them! The paeds nurse confirmed this is not uncommon.

GI bugs can also affect the pancrease and gall bladder, which secrete enzymes important for digestion and metabolism. I'll spare you the TMI of what happened when I had a GI bug with gall bladder inflammation, needless to say it was most peculiar.

I can imagine any combination of those effects (reduced motility/reduced secretion) could cause increased food sensitivities and worsen reflux.

Have you tried the BRAT diet for your LO combined with some low dose reflux meds? Hope it's better soon. xx

[midivydale]

Oh saffron, I was hoping you would be around. Very interesting and informative and along the lines of my own thinking. These bugs are awful as the aftermath set miniivy back for weeks and weeks.

Great advice about low dose meds. Thank you