5 month old with severe reflux - paediatrician recommendation?

[Wooly]

Hi all

My 5 month old has pretty bad reflux which is causing him a lot of discomfort. He is on omeprazole which is helping a little and I've just started weaning, which again seems to be helping slightly. Has anyone seen a specialist they could recommend? I'd quite like to get a proper diagnosis and discuss medication options.

Sorry if already a thread on this - writing in haste while baby and toddler sleep!

Thanks

[hellosailor]

Hi there,

Dr Babu Vadamalayan is the senior gastro paeds consultant at Kings, you get referred to his reflux clinic via your GP but the waiting list is sometimes months.

Alternatively you can shell out to see him privately (at the Guthrie clinic at Kings) and you will get an appointment within a couple of days. Both mine saw him privately as the waiting list to see him on NHS was so long and they wouldn't feed, screamed non-stop and the idea of waiting for months was unbearable. I think it was about ?150 to see him. if you can pay to see him privately, he can then add yo to the NHS list so if the reflux is ongoing, you can then start seeing him on the NHS when you get to the top of that list.

His secretary's number is 020 3129 8486.

How long have you been using the omeprazole for?

xx

[Convex]

no advice on a specialist but if you need disposable syringes for medication please let me know as i have a load to give away.

[midivydale]

I am sorry to hear your little one is suffering. If you or anyone else need infant gaviscone I have alot of it at home (all in date, unopened). Wishing you the best of luck, you are not alone.

We used Babu first privately and then on the Nhs. My son is 3 1/2 now and we still see Babu about twice a year.

[midivydale]

Wooly, how much omeprazole is the lo one? Is there other issues such as CMPI?

[midivydale]

Here is an old thread with alot of information on it;

http://www.eastdulwichforum.co.uk/forum/read.php?29,862413,page=1

[Wooly]

Thank you all v much for suggestions.

Hellosailor - will give Dr Vadamalayan a call, thank you. At this point I am definitely willing to pay to be seen quickly!

He's been taking omeprazole for about 7 weeks. It's definitely helping but he's still pretty bad. He still brings up an awful lot, but it doesn't seem to hurt as much. We started on half a tablet a day (I've been given mezzopram). We struggled to give it to him some days (he would immediately bring it back up) and/ or maybe dose wasn't enough. After a return visit to GP we are on three quarters of a tablet a day. I did ask about liquid form but GP said she can't prescribe (CCG won't pay for it as more expensive than tablets), so thanks for kind offer Convex but have no use for them at the moment. I wonder if I should be hoping for more - that perhaps different medication can alleviate most symptoms - or does he just have to 'grow out of it'?

I'm b/feeding and have gone dairy free, about 5 weeks ago. I wasn't immediately sure if making much difference, but think it definitely is now - I've fallen off wagon a couple of times and he's been seriously unhappy.

I also started weaning a few days ago and that seems to be helping - but saying that he's currently screaming in Dad's arms so problem not solved. His sleep is terrible - up every hour or so.

I did also try gaviscon but just couldn't manage giving it half way through every b/feed with cooled water, whilst also looking after the 2 yr old...

Will also check out old thread, thank you again. I am glad he is the second child. At least I know this isn't normal behaviour and I very much doubt there would be a second if he had come first!

[Ellie78]

We all understand what a nightmare this is.

We used Vademalayan on midivydale's recommendation and it made our lives much better. We had 2 private

Appointments. He actually wrote to our gp (who was very resistant to the idea of reflux in a 7mo) and we had other appointments on the NHS.

I would say, keep a diary of food given...My sons reflux isn't cmp related. It's connected with citric and asorbic acids, which can be in everything (breads, pastries, peas). It took us ages to work this out and once we had symptoms really settled. He still - at 3.5 - can't have any citric fruits, or even apples (!?), or even muffins etc (asorbic acid often used), but we are now off the omeprazole.

Looking back on it, I think weaning put added stress on his digestive system generally but - particularly as lots of citric fruit is often recommended as finger food - and, if I had my time again, I would be careful about overloading with very new experiences with a child who is responding in this way. I was too focused on dairy as the culprit and wished I'd been more open to other causes.

It was horrific for us. He was in so much pain and we didn't know what to do. That - and the sleepless nights that went well beyond the early months - probably explains why he's stil an only. I couldn't do it again at the moment.

[Ellie78]

Ha! cross posted.

Didn't want to sound so negative. It really does get better. But I really feel for you, it's so tough.

And I know that being a second is probably easier in a way but I appreciate also how difficult it must be for you to have another child to look after at the same time, who needs are so different. Yes, good that you know it's not normal (abs that you can tell everyone to F off when they're telling you this is - and I quote - 'what babies do!'- but it's tougher for you in other ways

Thinking of you - good luck.

[Ellie78]

Btw- ask for losec (think that's right?)- dissolvable tablet that you can then administer in calpol syringe. Much better than the liquid stuff and actually dissolves, unlike the other tablets (though you have to swish gently a bit).

Definitely the most effective and we tried a few!

[midivydale]

Great post Ellie! We also struggle massivly with acidic food (citrus, tomatoes, apples and any fruit juices as well as most ready made sauces) and like you it took me ages to figure out as focused entirely on cmp.

ps - we have identical kids, so similar in so many ways.

[midivydale]

Thought about this last night and agree about the losec. They were by far the most effective for us. We used to mix it with a small amount of water and mix with fruit puree as we found it worked best when not too dialuted.

Not for a minute pretending to have all the answers but I really feel for you. It is so damn hard. We have also stayed with the one baby as the first year really broke me.

Please let us know if we can help in anyway. Alot of us have been where you are - you are not on your own and it will get better.

[hellosailor]

anecdotally I'd heard that the liquid omperazole works better than the tablets, but as you say, GPs don't want to prescribe it as more expensive. BUT if Babu Vadamalyan prescribes it for you (you can ask) then your NHS GP will most likely continue to prescribe the liquid once he's written to your surgery. This is what happened with my two.

[Wooly]

Thanks for further suggestions, will ask for losec/ inquire about liquid omeprazole.

Reassuring to know others have been through similar. It's been a very tough few months!

[etta166]

I've been trying to remember the combination we ended up with, and I'm pretty sure it was domperidone, ranitidine and omeperazole by the time we got our third child's symptoms under control. My second only ever had ranitidine... The goon news is they both out-grew the reflux by about 18 months.

She was seen at Kings and St Thomas' (because of respiratory complications). Both hospitals were fantastic, and I'd be happy to recommend both.

Giving up bf and going on a special formula was the best thing I did for my third child's reflux, although it was psychologically a hard thing to do and I didn't completely stop bf... However the anti-refund formula helped her sleep for hours at a time at night and was a godsend for sharing night time feeding.

[Belle]

Just to second /third Babu, he is brilliant! We first saw him at six weeks. He was good at helping convince GPs when we needed the expensive formula/meds etc. I think we had the suspension for a while, so that shouldn't be a problem, but then later we used the capsules. My son is 4 now and it's like a distant memory, though I realise others haven't been so fortunate. It's good you've already got the omeprazole as that in itself was quite a battle as I recall, GPs were not keen - we only got it through Babu.

Likewise, although my first son had reflux it was mild, but it was with my second that it was really severe and I also would probably would have thought twice about trying for another child if he had been my first. The sleep deprivation and general lack of calm was terrible.

We didn't find any one thing was a silver bullet, but the combination of the right dosage of meds, the special formula, and just time (I'm afraid) all really helped. We were left with a legacy of bad sleep but that was almost completely sorted by sleep consultant Nicola (she's on the forum if you get to that stage! Child Sleep Solutions I think).

Have courage - it will improve! You sound like you're doing really well x

[Wooly]

Thank you Belle and others.

We saw Vadamalayan last Friday and are now trying Domperidone and omeprazole, which is definitely resulting in less sickness. I'm not sure he is that much happier though - the omeprazole made the biggest difference as that stopped some / most of the discomfort.

there seems to be so much else going on - teething, varying levels of interest/ success in weaning and totally appalling sleeping! He won't sleep at night until/ unless I feed to sleep and then cuddle him - won't settle at all in cot. My mum babysat so we could have a much needed night off a couple of evenings ago and looked traumatised on our return! I think I'll definitely be calling on Nicola when I'm more certain he's not hungry.

[Belle]

Ps other things we did with varying degrees of success (and prob younger than 5 months so I'm sure you're doing them already) - was used a sling a lot (a structured one, v comfy) to keep him upright as much as poss, and we tried one of those bolster things for lying baby safely on their side (I think they are common place in France, we found it online). You're prob past that stage if your baby is rolling though.

It is so hard with sleep like that, especially after several months of sleeplessness. is he too big for one of those sleep nest things? You've probably already tried raised cot etc?