Support thread for all parents with reflux babies...

[PosieParker]

Just thought a pooling of ideas would be useful. Any ideas about meds, symptoms, coping strategies, things to make a baby quiet!!

Symptoms:

Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Little sleep
Constant crying/screaming

(please add)

Meds:

My memory is a little rose on this and I can't remember

Coping

SWING,
pushchair walks
accepting help
Sometimes putting your baby somewhere you can't hear them whilst you have a large gin cup of tea.

We have just had a screaming fit to end all screaming fits despite v. V. Loud White noise and loads of dancing about. She is barely asleep/passed out through exhaustion on me. Strike that - just woke up screaming again!
I would say safe to conclude we are dealing with cows milk intolerance!

Hi ladies. I'm new to this thread. Just tried to post but stupid iPhone lost it so sorry if this posts twice. Was looking for some advice please.

By way of background my DD is 8 weeks. She has been in ranitidine and domperidone for 3 weeks for reflux. Symptoms included projectile vomiting once a day and fussiness on bottle. She is also v windy and has had mucus in poo (possible cmpi?). Instant improvement on starting meds- namely no projectile vomit. After a week the vomiting came back so dr increased dose and it stopped after 3 days and since then she has also been feeding better and happier. She is currently on 1.5ml of domperidone 3 times a day and 0.4ml of ranitidine 3 times a day. She weighed 11pounds7 just over a week ago.

My questions are:

1- how often should dosage be increased? Was told it is weight sensitive but exactly how sensitive? Should it be increased weekly, fortnightly or monthly as a general rule...? Am getting her weighed today.

2- could DD have a cmpi if drugs are helping? Gp thought that if they worked then thus would suggest no intolerance...but am wondering why she is still so windy and mucus in poo...

Many thanks in advance for help!

Daisylulu I can help with the domperidone dose, as I've just spoken to our paediatrician about adjusting the dose for our boys. He said it's 400mcg/kg/dose.

Sorry, not much to add here as C has had a horrid virus for six days which has meant much screaming, many, many nappies and not wanting to eat at all. With all that going on I have no idea if the omeprezole has helped him at all. He finally seems better this morning so I can get back to working out how to help his reflux.

Thanks for the advice re the tablet yoga, he's on 3ml of liquid which is 5mg in 5ml concentration so I guess that's the equiv. of 3mg if it was a tablet. I am going to see if I can swap to the tablets as it's really tricky to get 3mls of the liquid into him, he hates it and will spit out as much as poss. I am thinking if I dissolve half a tablet (5mg) in a small amout of water then he's likely to get more of the active medication.

Sorry not to have much advice to give, this is all still quite new to me. Hope everyone has a good day.

it's a small world

Thanks bagofholly - just got back from having J weighed so will see how that works with her new weight.

Joe don't be surprised if your LO doesn't take the tablet unless flavoured a little. I think they are meant to be pretty horrid!

Any idea whether i can give a four month old, who was two months premature, a tiny amount of baby fruit juice (to flavour, as you suggest)?

I would say it should be fine but perhaps ask your GP first. As I said before, lots of people confirmed for me that it was fine in a small amount of juice, I guess when you are talking about a couple of mls of juice considering they are taking the medications the juice is really nothing??!

Hi - bit of a late joiner - but my 24 week old was diagnosed with reflux when he was readmitted to hospital at 8 days

Is on Ranitidine and Domperidone and despite his low weight (9th percentile at the time) was put on the max dosage of both.

Since starting weaning, I have been dropping the Domperidone slowly as is not really visibly helping now.

Has anyone any experience in reducing and removing either this combination?

So we knew if he is suffering or not, we are removing one medicine completely then moving on to the next. This was something the GP suggested when we discussed how long he should be on this medicine.

So far we are down to 3 dosages of Domperidone, and will be removing another this weekend. He has not experienced any additional discomfort, so appears to be ready.

Only thing to add is he has started going off his milk - its been 2 weeks since last reduction, and refusal has been getting worse for past week - so don't think its related (but if anyone knows if it could be??)

I am anxious about reducing (and then removing) the Ranitidine as he still produces mouthfuls of acid and does do the movements that suggest he is uncomfortable/in pain over night (during the days this wakes him)

For us - this treatment was a godsend - but I am grateful we've begun getting him off his medication. I just don't want him to experience any additional pain or increased symptoms because of it.

Any advice gratefully received! In return happy to talk about our experience on these meds (never tried anything different)

thanks!

hi everyone. sorry oneof8 i dont have any advice as new to this.

pls excuse typing, lack of punctuation, typing one handed with upset baby on other.

feeling very :( and desperate today. after 3 days of a magical contented happy baby things have gone rapidly downhill in space of 24 hours. increased dosage of 0.4ml ranitidine and 1.5ml of domperidone seems to suddenly have stopped working after 1 week. i have gone from a baby drinking 210ml a feed (with no fussing and finishing bottle in about 15 mins), smiling and sleeping through night to an upset baby who is struggling to take 70ml, crying when feeding, arching back, coughing, hiccuping, not sleeping as pain waking her up after 10mins of being asleep. oh and she had diarrhea this morning. it is breaking my heart. i have some questions if anyone can help (i can't get dr appointment till fri but have left message asking them to call):

• do you think ranitidine dosage should be increased? she weighs 5.4 kilo and i have now read babies can have 1-3mg per kilo. her dosage equates to 1mg per kilo. my gp is reluctant to increase....

• should i push to ask dr to change formula to an AR one? she is currently on aptamil first.

• i'm still wondering if it may be a milk intolerance but if that were the case then surely the medicines would never have worked?!

ps - thank you!

daisy sorry if I've missed anything but how often is she having those doses? D has ranitidine 3 x daily and if your DD is having it at that frequency, 0.4ml sounds low for the weight. DD was started on 0.53ml when she weighed a lot less thasn 5.5kg. I also took my DD off domperidone as it wasn't helping her and seemed to give her a poorly tummy.

Are you just being seen by GP or do you have a paediatrician as well? You know, if DD is in that much discomfort, I would be insisting on being referred. Either ask for an urgent referral, or if they are making you jump through too many hoops and wait too long, rock up at A&E with screaming baby and they will have to see you. Sorry, I know people will say this is not what A&E is for, but neither is a baby in extreme pain going to understand that she needs to wait for an appointment. You do what you have to do.

For the discomfort for now, I would try feeding little and often, and just see if she settles better with that.

On the upside, I am happy to say DD is currently going through a contented phase, which is bliss! I am grateful for the lovely times. Her ranitidine dose is very weight sensitive though so always have to be on the lookout for grumbles and get the dose upped before the horrid screaming attacks start. Not had one for 10 days here so feeling

Dx

Daisy I'm in same boat as you with the milk intolerance thing. I think my DD has it to some level too, took her off comfort formula and onto HIPP organic one day this week and all hell has broken loose! Comfort is partially hydrolysed so I think helps her a little bit and then the Losec takes the acid pain away caused by the intolerance. Thats my thinking anyway.
Going to GP tomorrow to try and get Aptamil Pepti on presciption, hope GP is in good form!!

BTW my DD was on 0.7mls of ranitidine 3 x per day when she weighed about 5kgs, still didn't work at that dose for my DD.

thanks delia and yoga

yup DD is on 3 x a day. definitely sounds too low.

just had call from GP and he wants me to go in at 5.20. told me it 'sounds like infantile colic'..... errrrr no it sounds like f*cking reflux to me just like the paedatrician diagnosed! not holding out much hope for this appointment.....

delia - saw paedatrician as emergency case when they suspected pyloric stenosis but they discharged us with reflux meds and told to follow up with GP. Thankfully I have BUPA for DD with my work so going to push for referral.

Daisy I saw a Paediatrician who told me that he didn't think that Colic exists, just varying forms of reflux or intolerances! Tell your GP to stick that in his pipe and smoke it!!

I have to agree with your paedatrician yoga .

Do you mind me asking what paedatrician you saw and how you managed to get your GP to refer you? thanks!

I too have BUPA through work so basically went to GP and firmly requested a referral letter! Although GP is very good, so not too much in the way of a fight on my hands. Also GP had already prescribed what Paediatrician suggested, so glad it was through work!

Well GP has increased ranitidine to 0.7ml three times a day- so a big increase from the 0.4ml she was on. Fingers crossed it works. He has also prescriber infant gaviscon and said will prescribe omep if and when the ranitidine stops working. So that's good. Didn't ask to be referred just yet given he actually did what I wanted

Narmada was back at GP today and LO has been prescribed 15mg of Losec per day.
GP reckons she might have cows milk intolerance so I have been given perscription for pepti. However I told him she doesn't eat it without flavour so could he suggest any flavouring, he referred me to the HV who told me just to persevere until she takes it, feed cooled boiled water until she takes it! Bugger that, poor sod!
Can't find vanilla flavouring without alcohol, how much nesquik do you add? I tried a natural sweetner made from apple and carob but that still didn't work.

If it's cows milk intolerance, why isn't GP prescribing Neocate instead of a HIGH dose of losec? I think a second opinion from a paed with a special interest in gastro is appropriate. My boy was MUCH happier in neocate, we saw the difference in hours.

Oh Holly at my wits end!! Not sure what is happening with the reflux at all anymore!
She did seem to be settling on 10mg of Losec and was on comfort formula, however was still taking an age to have a bottle (up to an hour for 7oz) and also fussing on bottle etc. Also she never sleeps during day unless held, GP reckons she must be in discomfort.
She then started to vomit last weekend (reflux has always been silent to this point.) and my SIL suggested trying her on HIPP organic as worked for her reflux nephew. I tried on Monday at 4am and by afternoon she was very grumpy/crying lots and still vomiting a fair bit. Another thing to add at this point - did not give her Omeprazole on Monday until bedtime.
Back on comfort quick smart by Monday night, phoned GP on Tuesday as she had a bad night on Monday night and was still in a state on Tuesday, was told to up dose of Omeprazole, which I did. By Wed morning she was pretty much back to calmish baby that fuses on bottle and does not sleep (at all) during day. She then started dropping feeds a little and throwing up decent quantities of milk so I tried her on pepti but she wouldn't take more than 2oz. Doc reckons she is vomiting due to intolerance to milk?! Have tried with the Pepti for 5 feeds and she has not taken more than 3oz despite flavouring, tried one bottle of comfort again, still refused - vomiting on both.
So have just given her C&G 1 regular formula with Colief added and she has taken it with no vomiting! I think I will try her on the normal C&G for a few days, if she goes bonkers again, despite 15mg of Omeprazole in the morning then I think safe to conclude she has an issue with CMPI?!
Sorry for long story, needed to vent a little & would appreciate advice on situation is 15mg very high? It won't harm her will it? What do you think of my strategy?

Sorry, Neocate? Is it nicer than pepti to taste? She seriously will not accept pepti.

Never heard of Pepti, sorry! My paed put DT1 on neocate and DT2 on enfamil AR. DT1 is the silent refluxer. Our paed said our GP was likely to have a fit at the cost (£30 a tin, which lasts about a day and a half! It's entirely milk free and I also add 2 sachets of gaviscon to each feed. He takes it nicely, so it seems to be ok. The enfamil is very pre thickened and goes VERY gloopy within about 30 mins or if the water is warm.
Our paed appears to have taken the view that it's better to try a new prescription formula than up the prescription meds. I think the neocate is for multiple allergies rather than "simply" cows milk. This is from the website:
www.neocate.co.uk/aaa_neocate/12331-what-is-neocate.html

Now ladies, my DD has improved again on the 15mg Losec. Do you think this could happen if she had an issue with CMPI?