Silent Reflux - almost 5 week old. Advice please or just share your experience.

[Passmethecrisps]

Hi there,

I am looking for some advice regarding the ongoing management of silent reflux. Also, having read some awful threads where people haven't been taken seriously, I hope that this can offer a bit of hope.

Having ended up in A&E after days of our 4 week old refusing food and sleeping for only minutes at a time we were admitted for a night and diagnosed with silent reflux (she was obviously).

We have been prescribed Zantac 0.4ml 3 x daily, domperadone 0.27ml 3 x ml, gaviscon infant 1 sachet 6 x daily. We use tommee tippee closer to nature bottles. We had previously been advised by the HV to use Aptimel comfort formula due to nasty constipation. We are now going to move to Aptimel liquid.

The registrar advised us about tilting her basket, gentle but lengthy winding and keeping her upright as much as at all possible.

Does anyone have any experience or advice to add or share? I have a niggling thought about the bottles. During the 24 hours she was in hospital she was able to take 90ml from the tiny single use teats. Now we are home she is struggling to take any more than a few ml from the tommee tippee teats.

In addition to this LO also has thrush in her mouth as a result of our ill-fates attempts at breast feeding. She is now on daktarin having been on nystan for almost a fortnight. Maybe not relevant but part of the bigger picture for us.

Having had a baby who never cried at all until 1 week ago we now have a sad wee soul who spends much of her time in pain. Any thoughts, ideas, experience you can share is greatly appreciated.

I should probably add that the OOH GP who saw us at A&E was not massively helpful (thought colic which I wonder if is the 'go to' condition. Maybe I am being unfair) although sympathetic.

We went to our own GP the next morning and he immediately referred us to the paediatrician who saw us that day.

The term 'silent reflux' was never used. They talked about reflux without vomiting.

THe meds take time to work and time to get the correct ones to work for the individual.

Thanks random. In your experience, how long did it take?

About a week, it did start to help but a full week or so for it to be as good as it got.

Dare I ask how good that was? At the moment I have to hold her for about an hour after feeding just providing comfort and cuddles.

Well it took until nearly 6 months to get my dd diagnosed so the fact she could then sit up helped. We had a lot of evening wakenings and poor napping until she was 2...

6 months? I can't imagine. We had just a few days or the screaming cry and I couldn't take it any more. I am so pleased that it was taken seriously.

My DD finds comfort in a dummy. I wasn't initially keen but you can actually see the relief on her face. Se had been comfort sucking on her bottle but the milk was making it a vicious cycle.

Hi - I've just posted on a similar thread so I will copy and paste some of my answers from there - hope you don't think I'm being lazy!! It is miserable though and horrid to see your baby in such discomfort. We had an A&E trip after HOURS of screaming and vomiting one day, to be told it was colic. I did the face at the doctor because I do think it's a bit of a catch-all description of symptoms rather than a diagnosis but anyway ...

You have my sympathies - DS has reflux but wasn't diagnosed until 8 weeks or so and that was after me badgering our doctor. Luckily he referred us to a gastro paed so I would definitely pursue this. However our waiting list was about 3 1/2 months so we decided to pay for a private referral initially which meant DS got on medication sooner.

Time is the only thing that will resolve it but the meds and various other things can reduce symptoms and make it more manageable. This is what we did...you've probably tried lots of these already though.

• fed upright, no lying down for half an hour or so post feed
• cot wedge so DS slept at an angle
• comfort milk (we used aptamil and they now do a reflux one)
• infant gaviscon (this made DS constipated the whole time he was on it so we used to give him cooled boiled water between feeds)
• ranitidine and domperidone - deffo helped us but took maybe 2 weeks to start seeing effects. But he was like a different baby on them.
• dummy seemed to comfort DS too

We were advised to start weaning early at about 5 months but it was only on doctors advice. Things did improve once he was sitting up more, then moving about, then eating solids. But I well remember at your stage that all felt such a long way away. He's 11mo now and we've just stopped his meds to see if things have improved. So far, 3 weeks in, he seems totally normal so they do outgrow it eventually. But it's hellish and so little understood by the typical GP.

Worth remembering you need to get your dosages checked to increase in line with your baby's weight going up.

PS we switched to Doctor Brown's bottles which helped a little bit too.

Thanks gozer I hadn't realised there was another thread. I appreciate any advice copied and pasted or otherwise!

Thankfully it seems our GP took it very seriously. The paediatrician advised us to keep checking in with the GP so will pursue dosages.

She already seems more settled having been on the meds since Thursday night. I just want to see that we are doing everything we can do her.

Did you use both the comfort milk and the infant gaviscon? I ask because the IG says not to use it with thickened milk.

No worries - I actually had to check in case the same person had posted twice in different topics!

Yes we used the IG with the comfort milk - I was worried about the thickened milk but I rang Aptamil and they said it's not actually thicker milk, but partially broken down so easier to digest. I also checked with our gastro paed and he said the same. I did have to use the next size teat up at every stage though but that was more because of the IG than the aptamil. DS was on aptamil comfort plus IG for about 6 months I think so you can use them together but he was fairly constipated for a while.

Aptamil have started doing an anti-reflux milk which IS thickened so you couldn't use IG with that - we tried it half-heartedly but tbh it was a massive pain to make up so didn't bother with it.

Possibly pointless advice but my dd has awful silent reflux and we steadily moved up to faster teats. It hurt to drink so liked to get it over and done with as fast as possible. We have now ended up on Y cut. She can drain 5oz in under 2 minutes.

Also if meds not working within two weeks make a massive fuss... You don't want to add oral aversions to silent reflux

That is good advice ophelia. That was what made us wonder about the gaviscon plus thickened milk - it was like paste and it was taking her an age to get anything.

Ah, thanks gozer.

She has been horribly constipated anyway so I wouldn't be keen to add anything else to the mix which is likely to exacerbate it.

ophelia food phobia was one of the issues I have been concerned about. She was extremely difficult when I tried to BF her and quickly developed an aversion to it whenever she saw my boobs.

Hugs to you OP, its a nightmare but you WILL get there.
We had gaviscon in aptamil comfort, which was like custard but did the trick, we did need the stage 3 or 4 teats. I used Avent classic bottles with no problems. Like a pp said, at 5 months DD could down 8oz in under 2 mins lol! Propped up cot, upright in a sling much of the day, had to use carseat in the travel system as she wouldn't lie flat in the pram. We started at 5 weeks and by 9 weeks she was sleeping through the night! She had a dummy which helped as she was so nommy, but also produces saliva I think which helped her to swallow and keep it down.
Constipation was an issue but water in between feeds helped, and then once she was weaning it was much better. We stopped the gaviscon at 9 or 10 months and she's been fine since, I don't think she was in a really bad way though compared to others. She doesn't have any allergies or intolerances which I know can be an underlying cause in some severe cases. The best we could be suggested was immature bowel, which would improve and it has. At nearly 3 we were warned she might be a late potty trainer and that has also been the case.
Give it a go, don't be fobbed off, sounds like your gp is very good. You will get through it!

Thank you snowflake!

We are actually just about to head back to the hospital as she has refused food since 9am.

The treatments seem to be making her feel better but she is refusing to eat so that's not much use!

I was telling her earlier (not that she cares but ya know!) that every day she grows bigger is a day closer to being better

If she's constipated that could be stopping her eat too

Pass - I hope all is ok. A baby at the baby group I go to has a cows milk intolerance, originally diagnosed as reflux. Several trips to a&e (and lost weight) he was diagnosed.

She also uses the mam bottles. From tommy tipee.

I really hope p is ok. Must be such a worry for you.

If all else fails a 20ml syringe with milk, place baby upright on knees but at low angle, distract somehow, feed... Desperate measures but... Will get milk into her.

Quick update.

We were admitted to hospital yesterday and at midnight last night a doc suggested a lactose intolerance. We are staying in another 24 hours to see if her eating habits improve.

Thank you to those who gave advice.

Waves to horsey!

Best of luck. Poor little thing. You are her strongest advocate so don't be scared to trust your instincts at every turn. Hope she picks up soon.

Pass I have a feeling J may be joining the ranks of the cows milk intolerant / silent refluxers - our family is rife with it. It's going to mean a total diet change for me as I'm EBF - no chocolate :(

We are home! 4 nights in hospital, a bag of meds bigger than her, soy milk and a pressie from the nurses!

I admit that I was genuinely terrified when I read about the experience people have getting silent reflux and intolerance diagnosed and treated but all my fears have been allayed.

For the assistance of anyone else who might find this thread the advice given above is spot on - weight gain is not the only indicator of wellness. My daughter has not lost any weight but her behaviour changed radically. Babies are not just 'cry-y' - they cry to tell you there is something wrong.

Thanks for the support, ladies.

And YW let me give you a jock-like sympathetic punch on the arm.

Thanks pass