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.

V glad to hear that P is home. Your words are very wise and have been so helpful x

You need to get a book called Colic Solved which despite the title has nothing to do with fobbing you off with a colic diagnosis (or lactose intolerance which is vanishingly rare as a primary condition and almost always secondary to cows milk protein intolerance) and everything to go with getting clued up about reflux and CMPI.
Also check out the Little Refluxers support board

Thanks baking. I think I have come across that book recommended when I was researching prior to diagnosis. I will take a look at it.

Oh, and baking it is a strange thing as all the medical people were using lactose intolerance and milk intolerance interchangably. Having looked into it myself I think it is cow's milk protein intolerance. Am I right in thinking that had it been a true lactose intolerance she wouldn't have been able to take my milk? As it is her problems only started when she went to formula. I don't like milk at all so she wasn't exposed when I was expressing.

So our doc agrees my wee one is cow's milk protein intolerant - and we are going to try to treat it just by diet change initially by me cutting out dairy - are we mad? Should I have gone with meds too? Is there a big silent reflux thread?

Lactose intolerance and milk protein intolerance are not the same thing - many doctors seem to be confused.
Breastmilk contains a lot of lactose and no amount of altering your diet will change that. Since babies are evolved to drink breastmilk true primary lactose intolerance (where they are unable to make the lactase enzyme) is very very rare. It is common for new babies to take a while for full lactase production to kick in, which may be one cause of colic and why lactase drops help some babies. Anything that causes damage to the gut lining will reduce lactase production because it is produced at the tips of the villi (projections in the small intestine) hence you can get secondary lactose intolerance developing if there is an unaddressed food intolerance or after gastroenteritis.
If the problems started when moving to a cows milk based formula then cows milk protein intolerance is very likely to be the problem.
Yellow Wellies (great name) you're not mad - cutting out dairy can make a massive difference. Don't use soya to replace it, 50% of CMPI babies also react to soya. Give it a couple of weeks and if things are not improving then you have the option of adding in meds.
Do have a look at Little Refluxers - it's all that kept me sane the last couple of years.

Thank you baking and another punch for you YW.

If one more person tells me she will grow out of it I might just shove my foot up their arse. I know this won't be forever but at 2am with a screaming, writhing child weaning seems a long way away. Having said that, I know noone means any harm.

I have checked out little refluxers and will surely find it helpful.

Thanks again all who responded.

Thanks bakingtins - the name is from my fisherman's wellies - essential footwear up here on the Northern Isles in the winter.

What bakingtins says x 100. At the risk of upsetting the apple cart further....you may wish to demand ask for a hydrolysate formula as opposed to soy. As baking noted, many CMPI babies cannot handle soya. Some - my DS for example - can, though.

Good point narmada. My LO already seems better on nutramigen but it is always worth keeping an open mind.

Is there a big reflux support thread? I found a full one from a few years ago that was very useful but if there is something more recent could one of you ladies point me in the direction of the link?

So far, touch wood, diet changes and positional changes for feeds and sleep, seem to be making a massive difference. I got more sleep than I've had in months last night. We start on the ranitidine today. I love my GP that he let us miss the infant gaviscon step as I didn't fancy trying to get that into a BF baby!