Ranitidine isn't working anymore

[Trinpy]

Ds has been on ranitidine for silent reflux since he was 8 weeks old.We've been increasing his dose as he gains weight. He's 18 weeks now, weighs just over 8kg and is on 1.5ml x3 a day.

Yesterday he was a bit fussy with feeding, today he's completely refusing to bf. Only way I can get any milk into him is by expressing and then giving it to him in a bottle with some gaviscon. Whenever he's awake he's crying, screaming, whining.

There's only one doctor at my gp's who listens to me and will actually prescribe stuff and she only works Thursdays and Fridays. I just don't know how I'm going to cope until then .

Happy to hear from anyone who's been through this.

[captaincake]

Could it worth calling out of hours doctor today? I really hope it gets better for you soon you must be exhausted with it My 11 week old has reflux too and we've recently had 2 weeks of total hell with it so I feel your pain. He is on the up slowly (but it's still crap) again now so there is a bit of hope. Can you get a little bit of time away from the crying at all? An hour to have a bath or something?

[Trinpy]

Hi captain! Thanks for replying, sorry to hear about your ds. Is he on any medication?

I've really been put off talking to any hcp about it apart from this one doctor. Everyone else I've spoken to - doctors, health visitors, even the pharmacist - has been really dismissive and made me feel like a crap parent. They all seem so shocked that I would give my baby medicine when obviously it's just because I'm pfb/getting too stressed/getting too depressed/not bf right/not burping him enough/etc. I've really lost all faith in them now.

I'm on my own with him all day today, but dh is at home tomorrow so he can come with me to the gp for moral support if it's still awful.

[feekerry]

my ds is now 26 weeks. been on ranitidine since 18 weeks. it has helped a fair bit but fair to say it appears to wear off aafter some time. i have read ranitidine is very weight dependent. 1.5 mls 3x a day is on the minimal side dosage wise.pls do check but i think dosage guidelines for babies up to 6m is 1ml per 1kg so if ds is 8kg then he should be on around 8mls per day.
ds is around 8kg and i give him about 2mls x 3 times per day.. and it seems to keep it at bay. you could try inc dosage just for one day to see if it helps?
ds has just started solilds and that has helped loads

[bakingtins]

There are 2 forms of ranitidine, the infant suspension is 1mg/ml, the adult stuff is 15mg/ml. If he's having the adult stuff he's already towards the top end of the dose (1-3mg/kg three times a day or 4-8mg/kg total dose, to be divided into 2 or 3 doses)
As well as being weight sensitive it tends to work less well over time. We had to go onto Omeprazole at a similar age because the ranitidine stopped working.
You don't mention diet/ special milk. Have you ruled out CMPI?

[bakingtins]

Sorry, you did say you were BF. Have you tried going dairy-free?

[Iggly]

The dosage probably needs to go up. I has similar with ds at a similar age. The other thing is they go through quite a growth spurt too so it could partly be that.

Also have you tried cutting out stuff from your diet to check for a link?

I would feed ds when he was drowsy - the only way I could get him to feed.

[feekerry]

hang on.... sorry to crash but ds is getting 3 x 2 ml per day but the concentration is 150mg per 10ml ( so the adult one) isn't this too much if he weighs about 9kg??

[Trinpy]

feekerry, my maths isn't great but:

3 x 9 / 150 x 10 = 1.8

so 1.8ml x3 a day. Does that look right to you?

According to his weight, I can go up to 1.6ml with ds. The last doctor I spoke to though said the most he could have was 1.5ml until he gets to 6months though .

Haven't tried dairy-free yet because I've heard mixed things about it and don't know what to think now!

[feekerry]

oh okay your maths are better than mine!
you could always just try inc dosage for one day as it works v quickly so you will know in a day or so whether inc dosage improves things.
ds was originally diagnosed with cmpi and i have been dairy free as much as i can but can't say it made a huge difference plus ds just starting soilds and has had dairy and again no big issue. i don't doubt most with reflux are probably sensitive to dairy in some way

[captaincake]

Hi, my DS is on gaviscon and I'm dairy free. The gaviscon didn't work at all until I started making it up with just 3mls or so of ebm instead of 15mls of water. He's also been given nutramigen which we mix with some ebm so I can have a break sometimes. It is foul so that's why we mix it.

Sorry to hear people have made you feel bad that's horrible please try to ignore them. It's incredibly difficult being with an almost constantly screaming baby all day, especially on your own. Could your DH take some holiday or do you have anyone else who could help?

It might be worth trying dairy free for just 2 weeks, you should notice a difference in that time if it's going to. I was told you have to be TOTALLY dairy free for the fortnight if you're going to do it though.

We went to the gp when we could just not cope with the almost 24/7 screaming anymore. It was after his rotavirus vaccine and that definitely made everything 10x worse. The gp sent us up to hospital where we got a lot more help.

[Chaz1210]

Have you checked for a posterior tongue and or upper lip tie? These are usually associated with silent reflux & once revised can help massively!

[Trinpy]

Did going dairy free make a difference for you captain? I might wait until things have settled down a bit and then try it for 2 weeks so I know then if things get better its because of that rather than something else.

chaz - he's been checked for tongue tie and lip tie several times because he keeps refusing to bf everytime the reflux gets bad, so at least I know that that's not an issue.

[feekerry]

i going to give it another go starting today as we have had a few really bad nights (grunting/farting) last few days and i wonder if its because he has started solids and had some dairy.
i could do with shifting a few pounds so might as well give it another go!
i will report back!

[bakingtins]

I recommend you order the book "colic solved" which despite stupid title is written by a gastro-paediatrician and is really good about reflux, CMPI and all the different tests and meds available.
Cows milk protein intolerance underlies half of all reflux cases so it is well worth ruling out. I agree you'd probably see a difference within a couple of weeks of strict dairy withdrawal though IME it took 6-8 weeks to see the full extent of the improvement. It takes a few days to clear your system, a few days once your milk is clear to clear LO's system, some time for gut healing once allergen exposure stops....
Half of CMPI babies also react to soya so I'd suggest you don't use soya products to replace dairy, at least during the initial trial.

[captaincake]

Dairy free has made a little difference. I 'm expecting to be told at our next appointment that cutting out soya too is the next step. They have already mentioned that. I 'm hoping from bakings reply that it'll get even better in a couple more weeks.

[Trinpy]

Thanks I will definitely order that book. When I said I'd heard mixed things about going dairy free its actually on mn that I've read conflicting information, so I think it's something I need to research more.

[Trinpy]

Update:

the nice doctor I normally see was on leave so I had to see a different doctor who said he'd never heard of anything other than gaviscon and ranitidine being given to refluxy babies but said he would contact the paediatric team at the hospital about it and get back to me. That was yesterday morning and I've heard nothing since. Called them 3 hours ago to chase up and again told they will get back to me, so let's see.

I'm still expressing all feeds apart from one night feed which he will have straight from me but fusses/arches his back a lot throughout. He has started to cry during bottle feeds now too . It took 8 hours to get him to settle down for a nap today then he woke up after 30mins screaming.

I just had the last of the naice greek yogurt in the fridge so I'm all ready to go dairy free from tonight . I've decided that if he gets worse over the weekend I will take him to a+e.

Thank you to those of you who replied and for all your great advice .

[Sparky321]

Hi my dd has the following symptoms do you think it is possibly a silent reflux and will a gp take me seriously?
After feeding she often gets hiccups which include some very strange faces like she's tasting something horrible. The past week she's been really really sick within 1/2 hr of a feed. Yesterday she screamed like she was in pain and was then sick. She's happiest upright rather than a lying hold. When sleeping in her moses basket she grunts amongst other strange noises and is very windy. I should mention she is 8 weeks old and is
ebf. Any suggestions would be grateful. Thank you