Serve acid reflux in babies

Have you been told to try removing certain foods from your daughters diet?

With ours the reflux was actually just a symptom of a deeper problem that turned out to be an allergy/intolerance to dairy.  Have your doctors discussed excluding certain foods? 

Sorry forgot to say you shouldn't exclude food types without discussing with your doctor first...  How old is your daughter?   

hi

she is nearly 7 months old, they have told me to go on a diary free diet but it dont work she still really bad.

many thanks

Hi Amy,

I'm so sorry to hear your little one is suffering badly with reflux. Our eldest son (now 6) had dreadful reflux for many years and was in a lot of pain. He cried day and night and projectile vomited after most feeds and through the night.

I really feel for you as I remember how upsetting it was. It's hearbreaking to see your child in pain and not know how to help.

When they suggested she goes dairy-free (are you breastfeeding or is she on a dairy-free formula?) did they also mention that soya intolerance often goes with dairy intolerance and therefore many medical professionals suggest both are excluded at the same time? Have they offered you advice from a dietician if you are on a dairy-free diet? Has your daughter improved since starting solids?

Which medications have they tried?

sorry to ask so many questions, just trying to think of what other things you could try.

If you have tried lots of medications and the diet isn't helping then maybe you could consider asking for a second opinion? We were told our son just had reflux for 4 years and then when we went to Great Ormond Street for a second opinion we found out that the reflux was due to a different gut condition.  Since then, our son has improved a lot because he's getting more appropriate treatment.

You are entitled to a second opinion but maybe try to ask for it by someone who has expertise in the gastro field so you don't just get another general paediatrician? I rang round my local hospitals once trying to find an expert in my area.

Sending you lots of sympathy,

Kitty

hi kitty

thanks for your reply means alot.

yeah she on dairy and soya free diet she also on apitmal pepti fomula. ever si i have started solids she has just got worse and worse. it is defo heartbreing watching her go through it day and night. she is on ranitidine and domperidone but it does nothing. i really dont know what to do now, i have got dietion and consultant appintment on the 8th and 14th spetember.

how did you manage to get an appointment at great ormound street because i would be really intreasted in looking into that.

many thanks

amy

Hi Amy

Just a few thoughts that may be worth trying- but sorry if you've already thought of these:

Maybe your consultant could consider a different reflux medication like Omeprazole? It works in a different way to Ranitadine and reduces the amount of acid the stomach produces so it's less painful.

Also, you could ask to try a different formula. Great Ormond Street often prescribe one called Neocate as it's one of the most 'broken down' and hypoallergenic formulas you can get. Doctors hate prescribing it because it's extremely expensive but it made a huge difference to my two, whereas the other formula's we'd tried hadn't really helped. You may have to push them for it but it might help and I would have thought they'd agree to prescribe it!

GOSH told us that you often have to try dietary changes for up to 6 weeks to be sure if they are making a difference or not as some reactions are 'delayed' and also it can take the gut a few weeks to heal if it's damaged - so maybe try Neocate for this long before you know it hasn't helped?

If she is worse since solids then maybe she is also reacting to other foods? Our sons had reflux due to a condition called Eosinophilic Gastro intestinal disorder (for more info see this: http://www.parentsown.co.uk/page/eosinophilic-disease) and some of the other children with EGID can't tolerate lots of foods including wheat, gluten etc. We have to avoid egg, dairy and soya. Maybe the dietician could advise? 

If none of these things help then maybe ask your consultant about a second opinion somewhere like G.O.S.H. All I did was ask my consultant (we had been with her a few years but things still weren't sorted) if she would refer us and she agreed. She sent a letter to a Gastro consultant there called Neil Shah and he agreed to see us and has kept us on his list since.  They usually see cases where other treatments haven't worked so you may find you have to try a few other things before getting a referral to them. I'm not sure but it certainly doesn't hurt to ask. You can also see Neil Shah privately at GOSH and the waiting list was only a few weeks when we did it (when your consultant writes the letter you can ring up and ask for a private one to speed things up). I'm afraid I can't remember how much it costs.

Where is your local hospital? We are in Berkshire.

Anyway, good luck. i'd love to hear how your appointments go in September and whether they have any good advice?

Take care,

Kitty

hi kitty

with her solids i defo make sure she dont have dairy soya egg or gluten and also wheat because i have found all these to react bad and i have even gave her the blands food and it still makes her really bad, all i gave her this morning was porridge and fo nearly 2 hours she was screaming in pain until she cried herslef to sleep and then she wouldnt eat anything after that for a while.

did your son gain weight whilst with this condtion?

Many thanks

amy

hi kitty

i always make sure that there is no dairy soya egg gluten or wheat in her diet. i have even tried the blandest foods and she still reacts really bad, for example this monring she had plain prridge and had a screaming fit for over 2 hours until she cried herself to sleep.

thanks for your advice so far it means a lot to me and has made me push more.

many thank

amy

Hiya

That's so sad she is in so much pain. Must be so stressful and upsetting for all of you.

Glad I could help a bit. I learnt the hard way to push for more help - I waited years before pushing harder and I regret that. I hope something helps soon.

I hope the appointment goes well.

Kitty

xxx

Hi

The fact that she reacts badly to so many foods makes me wonder if she may  have something else going on rather than straightforward reflux? Did you look at the Eosinophilic Gastrointestinal Disorder pages? I'm not an expert at all but I have learnt from my experience that some conditions are misdiagnosed as reflux in babies. Before I went to GOSH, I researched some conditions myself online and actually asked them about some of the conditions I thought my sons (both have it) could have - maybe this may help with your local consultant? Many consultants don't know much about conditions like EGID and so don't always think of them.

What reaction does she have? Is it just screaming in pain or does she also have vomiting or diarrhoea?

My son's weight was low for his first few months but then it was fine till he was about 1year when it started to drop. When he was a baby and vomiting all the time I just used to feed him constantly day and night to try to get more in (I was pleased his weight was good but it made things more difficult for me to get the doctors to listen to me that something was wrong). When he got over a year and relied more on solids he stopped gaining any weight because he developed a food aversion and would only eat a few foods and often refused food. I was told this was due  to him realising his pain was being caused by food and because he didn't get the right treatment till he was 4, this became an ongoing problem (although he's improving lots now) .

How is your daughters weight?

Kitty