Reflux advice needed

[gilz82]

Hi girls :wave: I'm in desperate need of some advice.

The short version of a very long story is that Noah is on Enfamil AR milk, ranitidine and domperidone for his reflux.

The domperidone was added almost three weeks ago and after a week of taking it he had three days of being so content and happy. No pain or vomitting etc so I really thought we'd turned a corner. That was a fortnight ago and since then we've gone back downhill, to the point I went to the gp on monday as he'd not slept friday, Saturday or Sunday night. Gp refered us straight back to paeds so he was seen there on tuesday

By coincidence we ended up seeing Noahs consultant. He told me just to feed him more when he's upset at night and to nevermind the crying some babies are just like that. WTF is that, this is the same msn who told me a fortnight earlier how important it was to not overfeed him!!

Since Tuesday he's worse as I did as he said and just kept feeding him, Noah is quite happy to eat constantly to keep the acid down so obviously we've had loads of vomitting, which makes the reflux worse

I'm taking him to the docs today for his first jags, does anyone have any advice on how I broach this subject so that we get taken seriously? I've spoken to plenty of parents of reflux babies and they seem to think once the treatment is right life doesn't need to be like this for their babies. That's all I want for Noah

Sorry for the length and if it's jumbled I've hardly slept for a week now

 

[AP]

Your consultants a knob i hate how medical professionals palm it off.

There will be room for increasing the meds- they are prescribed at lowest dosage for weight and theres a highest dose too. Also Noah will gain weight so it sounds like increasing the meds can help.

 

[gilz82]

Thanks just getting organised to head to the docs. Hopefully something will be done about things.

 

[confused87com]

my lil boy has the same, he is on gaviscon as well tho. He has some great days and some less so. Since he had the domeperidone and ranitidine he has improved but we stil ave days that are really bad, i just treasure the good ones. I found that if i put a dummie ( altho i hate them!) in after a feed it settles him better and he is less likely to bring it all back. I suppose it must be the sucking neutralising the acid a bit. he is like urs and wud drink forever if he could. he is part breastfed and these are the challenging times cause it come sback v easily. With his formula he should be havin 60ml every 4 hours. when we ended up in hosp last time i was told i was over feeding cause he was feedin every 3! Try telling a screamin baby they cant have their milk for another hr.
However i was shocked by the docs attitude and know there was no way i was gonna listen to my baby scream and vomit until the correct time passes. Now he has what he wants when he wants it. Ofetn 120ml every 2hrs. I get upset when he is in pain and i cant help but havent found anythin else that helps....ill beinterested to see peoples ideas
as for the nights....when he has a bad feed at night i end up with him lyingon his tummy on me, he settles so much better, not ideal but preferable to a screamin baby all night

 

[toothfairyx]

How is Noah doing?

 

[gilz82]

We had another paeds appointment today and they have recalculated his ranitidine and domperidone doses. The dosages he was taking were apparently out by quite a bit so they've upped them in line with his weight. Fingers crossed this actually makes a difference but the paediatrician said it could take up to a week.

 

[toothfairyx]

Fingers crossed it makes the difference

 

[NashiPear]

A few tips you might find useful (I did the reflux round a bout with my first born). Like you now know, the medication is weight sensitive, so increases may often be necessary especially in the early weeks as baby grows so quickly. Reflux tends to peak at about 3-4 months when they are quite active, but not yet sitting (so not really upright).

There are also other medications, although I think you might be in the US so what is available may be different (especially for a premmie). Ranitidine is commonly prescribed here but also proton pump inhibitors (PPIs) such as Losec (or Prilosec). There are a number of others too, but that seems to be the most common one here with infants.

If you keep increasing the meds and bub continues to go downhill, consider food intolerances and allergies. My daughter went through several med increases and was screaming the place down in pain. Every increase bought a little short-lived relief, but inevitably things continued to get worse.

I read that 40% of babies with reflux are cow's milk protein intolerant (CMPI) and so we took her off cow's milk based formula and the change was huge. Still reflux and needed meds, but happy on them and quite manageable, plus there was a significant reduction in vomiting. My daughter was also a comfort feeder and I had to be very careful with how much I gave her as she would scream for more, but it would make her vomit more.

This resolved once she was diagnosed as CMPI. She is finally growing out of it at 2!
At the time our alternatives was goats (which was too close to cow's milk and she didn't tolerate), soy- pretty good reflux-wise, but caused some constipation issues and prescription based formula. The prescription based formulas are hypoallergenic and have their proteins broken down so they are easier to digest and are amino acid based instead. Taste like crap, but bubs don't know and for some this is the only option. Probably what I would be asking for a trial of if you have a premmie and the meds aren't working as the others can still be quite allergenic like cow's milk based ones. The prescription formulas are a complete formula with all the nutrients a little bub needs, but hideously expensive. Over here (Aust), we get them subsidised if it is deemed necessary and prescribed, but I am not sure about elsewhere.

Hope this helps

I hope some of this helps you in terms of what to ask.

 

[gilz82]

Thanks I'm actually in the uk. Noah is already on a prescription milk called Enfamil AR. It makes the world of difference, we still get vomit but not the whole feed back like previously.

I'm going to give it til the end of the week to see if the increase in his meds is going to have an affect before changing anything else.

 

[toothfairyx]

Yeah you do need to give things time which is difficult to be patient with! I have to say Jamie is still a very sicky baby - loads of wet burps all the time at 10 months old, but it;s such a difference when they aren't doing it with pain. It really made a difference to us when we started him on solids which I did quite early (around 2.5 months corrected).
It also helps when they realise what to do to have a poo (if that makes sense!) as when they are young I don't think they go quite so easily and they reflux as much lower down their system. Thats why in keeping everything balanced whilst you are trying to keep feeds down you don't want them getting constipated and the Enfamil is a b*gG$r for that!

 

[gilz82]

Yeah I've found since Noah started the Enfamil he gets quite upset trying to poop. So I try to get him to take a couple of ozs of water at least once a day, twice if he'll take it but he's seriously not keen on water Its a pity you can't explain to a baby that constipation makes their reflux worse

 

[toothfairyx]

I relented with the water and gave him diluted baby juice. He wasn't keen on the flavoured water from boots but cow and gate do a little jar, says 4m+ but I ignored that! It was much more palatable for him, so you could try that if you were comfortable with it x

 

[rensben]

hi there ladies,

Some of you may have already seem my posts about reflux and how we found a solution but if you haven't hopefully this will help. My son was born at 30 weeks and had severe reflux. he was put on ALL the medications and nothing worked. He also had a milk thickener called magic mix that helped but did not get rid of the reflux. We didn't sleep for months until we found a product called gumilk. We ran out of our regular thickener and the pharmacist recommend gumilk. Well, from the first bottle with gumilk ALL reflux stopped and never came back! We stopped all meds immediately. Like I said, I have written about this so many times on here but nobody ever seems interested. Other thickeners like enfamil etc are crap and do not work. Gumilk is made with locust bean gum and aids in digestion as well as helps to keep the milk down. It is not available everywhere (i live in France) but I am willing to ship it to anyone who would like to try it. PM me if interested!

 

[alparen]

we have samantha on enfamil thickened a+ domperidone and omeprizole. Also she has vented bottles and vented nipples. I find they work well so i don't have t burp her as often if at all. She eats better and is settled with barely any burping. If we burp she'll spit up or just cry and fuss and then it's a nightmare to get the rest of her feed in. The burping really bugs her reflux. I try and only burp her once midway through her feed and thats it anymore she freaks out. I only burp her more often if she starts acting like she needs to be winded. The vented bottles help soooo much. Also the enfamil thickened hers has to be like a nectar consistency so it stays down. if it's like water she will not drink it and it has to be very very warm. if it's room temp or a bit cold she freaks out crying and squirming.