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30/01/2014 at 05:01
i feel this is all I ever post about but a couple of questions about ranitidine for those in the know! O has now been taking this for 10 days and I'm not entirely sure how much it should be doing. I did notice an initial difference in terms of his crying when feeding, he used to just eat, eat, eat and when I took the bottle away he would scream to the point I would have to give him a dummy to settle him and struggled to get near him before this to wind him. I've thought for a while that he was comfort feeding as his throat was sore so this made sense that he was now just taking what he needed as he was taking about 4 and a half oz rather than the 6 I make up in the bottle. This also coincided with a reduction in sickness, but again I think this was the 'extra' milk that he didn't need. Can you tell me what the effect was of the ranitidine on your LO's? Also how much were the prescribed? O is 4mg per day, which equates to 0.266ml 3x per day. On a quick google this doesn't seem much?
He'a still being sick, it's still every feed but sometimes it's next to nothing and other times it's quite a bit, at which point after he will root around looking for what's left in the bottle. A lot of his sick before was the milk he had just taken but now it's quite thick and its often still trailing from his mouth like glue almost and you can see the sort of seperated undigested milk as white content. Again after a google a lot of people are saying the ranitidine won't stop the sickness?
He is still on the aptimal comfort and his poo is awful. It's green, very runny and absolutely foul smelling. I thought the smell had improved slightly but I think I might just be getting used to it tbh. Our biggest problem now is wind. He is so so difficult to wind when feeding, he's ok bringing it up when I stop as he feeds but at the end of the bottle after about 10mins, he will start flapping about and I just can't get the extra wind up. It's a fine line as he's like a time bomb and the more I try to wind him the more I encourage sickness and that's when we get projectile again! We started him on infacol again this week to see it it would help but as my H says we seem to just be replacing one problem with another. His sleep is awful, particularly at night. We still have his crib raised at one end but everytime I put him down after about 5mins (max!) he will wake screaming. He will settle lying sleeping on me or h on his tummy but that seems to be it, as soon as I move him, even to put him down on his side, he will wake after a short time crying. On the occasion that he does stay asleep when I put him down, after maybe half an hour he starts pumping the arms and legs and wakes crying again as he clearly has wind and he will make constant unsettled and painful noises which you 100% cannot sleep through.
Im honestly near my wits end with this. Me and H are doing ok just now but I can honestly see this effecting us if it keeps up much longer. Were now sleeping in separate rooms so he can try and get some sleep at night. During the day isn't too bad as he will sleep in his cradle swing after his 8am feed, i try to get him out in the car seat/pram in the afternoon (again where he will nod off) and at tea time I put him in the sling to sleep so I can actually get dinner! At night I'm starting to get so agitated with O, I know it's not his fault but the constant crying is driving me mad.
im not even sure what I'm asking. Do I go back to the GP? MissusS if you read this, could the wind/sickness be related to the milk and cmpi?
30/01/2014 at 07:13
MDD, I'm so sorry you're still having a hard time of it. I know how testing it can be on a relationship - I feel like me and my H argue more now than ever due to frayed nerves and tiredness. I'm obviously not a doctor but the dosage does seen very low. A. Isn't on it anymore but was on 0.8ml 3 times a day at about 13lbs. When we were first prescribed renitadine we were given a very low dose which did nothing so after 2 weeks I went back and they upped the dose. I'm not sure if you know this already (so sorry if you do) but renitadine basically helps with the acid so it doesn't burn when they're sick. It may be you also need domperidone which is suppose to stop the milk coming back up and also move the milk through the stomach quicker so its not sitting there for too long so not there to be brought back up if that makes sense! And also, I'm realy sorry to harp on about this, but the pooing really sounds like A before she was put on AA milk. I know your HV has dismissed cmpi but it sounds so much like A's symptoms. It might be worth seeing if you can get a couple of tins of nutramigen AA or neocate which will last about 2 1/2 days each and just see whether it makes a difference. Lastly, have a big hug! Reflux is a *** and it sucks! x
30/01/2014 at 07:20
Forgot to say, renitadine and domperidone are both weight based for dosage so it will keep needing to be increased as O puts on weight x
30/01/2014 at 08:30
Thanks MamaD. O is probably just about 10lb now. He was only 9lb 3 or something when he got weighed at the prescription at the hospital. I did mention to my HV about how often he would get the dosage upped in terms of his weight but she said we could check it when I next see her (next wed).
When A got the milk did you just stop the ranitidine then? Have things improved or not really? I'm just waiting to phone the GP for an appointment now.
I'm just so sick of this, O is 8 weeks tomorrow and the last 5/6 have been a nightmare. It's totally heartbreaking to feel like this when I should be having irreplaceable weeks with my little boy :( it really does suck x
30/01/2014 at 09:43
Honestly, renitadine did nothing for us and we've now moved onto omeprozole but it was a right battle getting it! For us, going onto the specialist milk on helped with her cmpi symptoms such as painful wind, mucusy poos, straining to poo, gurgling stomach etc but she still had reflux (and possibly colic) on top of that. I know some people find reflux is a symptom of cmpi but unfortunately for us it's a separate problem. A is 20 weeks and we're still trying to find the answer. Although she's more settled now than she ever has been she's still sick with most feeds and sleep is just a battle. Just yesterday she went from 12 to half 3 between sleeps as she just wouldn't go to sleep no matter what I tried and she was miserable due to being overtired the whole time. I was more exhausted than she was. It's horrible because I found myself wishing she was 1 already so shed only be having 1 nap a day and I'd only have to have this fight once a day. It's like you say, you feel robbed of having your time with your baby. I don't go to baby groups as I'm too afraid she'll scream the place down and people will judge me plus I can't help but feel jealous of those with happy cooing babies that will just happily sit and play or just peacefully sleep. I had quite bad PND with E so feel I was robbed of her little baby weeks too as I was just in a haze the whole time. It does get better I promise - you just have to keep battling on taking one day at a time and one day you'll realise it doesn't feel as much of a struggle anymore. Let me know how you get on at the docs x
30/01/2014 at 09:49
I cant stress enough that if your GP isn't being supportive get in touch with HV's and inform them of your struggle. I had a fool of a GP who wouldn't entertain me or O's reflux ever which was half of my anxiety....knowing there was no one who was willing to help me. HV got involved, spoke to GP....still no help. So I informed the HV team and my GP that I would just take O to A&E everytime it got too much. I didn't this and got put on ranitidine, domperidone and infant gaviscon. You may start to feel better by just knowing that you have someone who will listen and try to help. Even if this is a trial and error approach at least you are on the road to finding what your O needs.
As others have said all the drugs combat different things to ease the reflux. Domperidone speed ups to the digestion of the milk so its simply not in their digestive system for long so It can't aggravate for long. The ranitidine aims to reduce the acid in the stomach so it doesn't burn when it comes up. Gaviscon adds a heavy layer on top of the contents of the stomach so its more difficult to come up.
some babies can manage on one drug, others need a cocktail of them all. It is trial and error.
You are doing every thing in your power to make your LO more comfortable.
For what its worth,,,, even though my O didn't have a lactose intolerance, we did find that his constipation and reflux was better on SMA LF milk. Again the GP wouldn't prescribe this...but once we were put on the cocktail of the above drugs we were able to go back to Aptamil Comfort but added in Movicol for his constipation. I see you have the more explosive side of the coin, and am honestly not sure what you can do about this.
Big hugs, I know its hard, Really hard. Could you and your H take it in shifts during the night so at least the pair of you could get a few solid hours each. We used to do 9-1 and 1-5 through the night so we could both semi function the next day!!
30/01/2014 at 10:33
I don't think I can add much more to the advice you've already been given. There are different levels of dosage for ranitidine, so S was on 0.5ml 3 times a day when he was 10.5lbs but was upped to 0.9ml which is the max dose for that weight. It is worth enquiring about domperidone as I've been told this can help with sickness. Gaviscon can also help as like munchkin said, it can stop so much milk coming up.
S's nappies are grim on aptamil comfort still, even though his reflux is well managed atm.
I'm sorry you're still struggling, get back to the gp and make a nuisance. I always went looking my absolute worst, I made sure they couldn't ignore how hard it was to cope xxx
30/01/2014 at 10:37
Popcorn, I like your thinking! I might use that myself next time I go! x
30/01/2014 at 10:40
Yes they can be milk allergy related. I read something like 2/3rds of reflux cases are actually milk allergy but obviously it's a lot cheaper to treat the reflux than the actual root cause. We never tried that but we did have omelrozole which didn't even touch Henry's symptoms. Get back to your dr. Have you for a referr to a paed?
30/01/2014 at 10:54
Just quickly as getting ready to leave to head to the doctors. I've got a GP appointment again so I'll see what he says. Munchkin my GP is lovely, but I don't think he knows much about reflux etc! I look like a dogs dinner so I'm sure he will get the full effect.
MissusS My GP referred us to the paed at the hospital a week past Monday (she was the one that told me that she wouldn't expect the symptoms to present like this and was looking for blood in stool and poor weight gain!) she gave us the ranitidine and asked us to use it for 2 months and then we would have another appointment. It's only been 2 weeks but there is no way I'm going through another 6 weeks like this.
I'll let you know how I get on! Thanks again for all your support and taking the time to post your advice ladies xx
30/01/2014 at 10:58
Good luck! Someone advised me on here if you can to find out the secretary's details for the paed you've been referred to and chase up with them. I did this and got my appt a lot quicker! (Just over a week!) x
30/01/2014 at 12:10
2 months! That's far too long to wait IMO. We were told we should see an improvement in 3-4 days and in 2 weeks an even bigger improvement with ranitidine and that's exactly what happened. I'm no expert but I think after 2 weeks if you're still not happy and O isn't right then they need to try something else for you. It's so frustrating for you. In the nicest possible way, I hope you look suitably dreadful for the doctors! Let us know what they say x
30/01/2014 at 13:51
Sorry for quick reply but has cows milk allergy been looked into as the symptoms sound similar. N was on ranitidine from about 4 months and is still on it now. He had a brief period on omeprazole after he was ill last year. You definitely have to increase ranitidine with weight. N is only on 1.4 mls at 23 months, it depends on the dosage they're going by. GP don't always know enough about reflux, we see an allergy consultant.
30/01/2014 at 14:10
Lady LL iv been talking to her about pushing for milk allergy as her baby's the same as Henry was.
Also 2 months is ridiculous. If they're no help (and i forgot your paed said that) see someone else. You really have to push bit it'll be worth every second of heartache when they're free from pain
30/01/2014 at 17:50
Bah, didn't go too well. The GP said that everything sounds quite 'normal' and that O will do lots at the moment that will be upsetting/hard to deal with but that it will pass in time. I asked about the cmpi and he said that in his opinion all formula fed babies have it to an extent as they're not born to feed from cows milk!! I was quite offended tbh, he might as well have told me I was a failure at BF! He said that given time he expects O and his digestive system to get used to the formula and he'll be better. I would like to retract my statement about my GP bring nice!lol!
I spoke to the HV this afternoon and she's arranging for another referral back to the paed at the hospital but it will probably be about a week.
I was googling and have phoned a woman who does cranial osteopathy and I've booked to go to an appointment tomorrow afternoon. Has anyone else seen a CO? I'm willing to try anything at this point and she said that she sees lots of babies with the same symptoms so hopefully it might help even a little. My HV said she know of one of her mums that went with their LO and it helped so as long as it can't do any harm I'll give it a go!
30/01/2014 at 19:47
Oh MDD that's appalling, I'm sorry to hear that you didn't really get anywhere with your gp. I really don't think that formula should cause a baby that much pain. I hope the paed can get O sorted.
S had a session of cranial osteopathy. It didn't do anything for his reflux but it really helped him bring up his wind a lot easier. Likewise, a friend of mine who's little boy had cmpi said that they went for a session and while it didn't relieve his intolerence it also helped with his wind, I hope that it helps O even a little bit xxx
30/01/2014 at 20:22
I am fuming about the response from your GP. Your baby has classic symptoms of cows milk protein intolerance. In fact if I was you, I'd google it, print off all the details and take it in then insist on a 2nd opinion. I saw 3 different GPs before we got S sorted and then had to wait 2 months for a hospital appointment. I ended up putting her on wysoy, cutting milk out of my diet and expressing as much as I can. She improved massively doing this, but then I was told off at the hospital for giving her soya milk, but they appreciated that I was limited as to what else I could do considering I had to wait so long for an appointment. You can buy milk protein free formula online - S has nutramigen. It is very expensive, but if you had enough for 2 wks and proved it made a difference, they'd have to take you more seriously. Some GPs will prescribe it themselves (they did for a friend in Wales) but others, like mine, have to wait for an official diagnoses before they'll prescribe.
Oh and S was exclusively breast fed and was CMPI, however her symptoms only really presented themselves when I was forced to give her formula due to lack of weight gain. My HV claimed that her constant green poo was due to a poor milk supply. Therefore your drs comment about cow's milk and formula is utter rubbish and I would be telling him so, at the same time I would be threatening him with an official complaint once my child was diagnosed!
30/01/2014 at 20:45
Just what she said ^^^ absolutely appalling. At the end othe day he's a general practitioner. He doesn't specialise, you need a specialist. If it was his baby in pain constantly I'd like to hear him tell his wife 'yes darling she has to get used to the milk' while the baby thrashes around in pain :(
30/01/2014 at 20:47
Are they handing out medical degrees with happy meals these days? Someone else I know was told today that babies can't be lactose intolerant! Honestly! I second what lwo said - nutramigen aa is on Amazon for about £35 a tub, or you could try your local chemists - a little independent one near me stocks to buy over the counter. Expensive but if you could get a couple of tubs just to see whether there was a difference. You'd have more amo to go back to the docs with then, although i'd be inclined to refuse to see that one and ask for another. Please don't let them make you feel like a bad mum for formula feeding. Keep up the good fight - you're doing amazingly!
30/01/2014 at 20:56
*cough* iv got loads of neocate in stock if you want me to send you a couple. For free. Fb me if you do x
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