reflux...

[jan2011]

sorry couldn't find the reflux thread....
to cut a long story short baby has had silent reflux since birth, has been on gaviscon infacol ranitidine and is bf during day with1-2 bottles of enfamil AR at night.

today we took her to the hosp after a bad bout hoping to get her medication changed on hv advice. we came home with carobel! after waiting for 4 and a half hours. the doc said that ranitidine means that the thickener in enfamil is cancelled out so we would need carobel - with her breastfeeds and her bottles. so in other words there has been no point her being on the enfamil AR all this time to help with the reflux (although it suited her better than sma and is prescribed)

anyone had experience of just using carobel for severe reflux? we are to continue with the ranitidine same dose (0.6 now x 3a day) and use the carobel with every feed, breast feeding as well. i really hope it works as i don't want to end up back at the hospital.

the doc also said the baby is very small so make sure she is being weighed regular. the hv did say she was a small baby but that she was meeting her targets on the percentile line she was meant to be on. is it normal to have a small baby or is she supposed to be going up the percentiles? all the advice and comments make me doubt and question and worry. does it mean she isn't doing as well as bigger babies? i don't get the whole percentile thing. as far as i was concerned the hv always said she was doing fine.

she just tried the bottle with carobel and screamed blue murder...ended up bf which went better

Not supposed to go up the centiles - the centiles are the growth curve for, say, the 2nd percentile and as baby grows they typically grow along that curve (an individual baby may go up a centile or two, or down a centile or two and that's fine). Babies are not supposed to climb the centiles they are supposed to follow their line (some may make their own though!).

A baby who is on the 2nd is bigger than 2 out of a 100 babies, that still means there are healthy babies smaller than them. A baby on the 75th is bigger than 75 out of a 100 babies. Being on a higher centile doesn't make them better or healthier or smarter, it just makes them taller/heavier. Not all adult females are 5' 4" and 9st so why should all babies be the same?

i get it better now thanks

It is confusing though, especially if you have HCP that treat children/babies who fall on the lower end of the centiles as having something wrong with them.....

I'm a bit confused. My daughter has chronic reflux too so I really feel for you.
You mention it is silent reflux ie not throwing up. Isn't carobel just a thickener? As far as I know it is used to thicken formula milk so that is stays down better. We have never used it though so I may be wrong.
I would say you do need the ranitidine to control the pain from the acid...this is what worked best for dd.
It turns out that her reflux was/is caused by a milk protein and soya intolerance and a while after cutting these completely from my diet we had an improvement. Could be something to look into

Is enfamil a special hypo allergenic formula or just thickened?

My ds is 1 and has silent reflux from birth, we were given ranitidine and carobel, both worked great , watch what flow of teats u have on the bottle with the carobel we had to buy toots of faster flows and muck about to see what best suited him, recently we were advised to Come of meds as he should have grown out of it now, we noticed huge difference when we stopped the carobel, he was up at night arching his back and screaming, so he is back on this in his milk, we had alot of bother with weight gain because he just won't eat as it's sore, just keep having her weighed at hv and they will keep u right, hope u get her settled , it is such hard work when u know they r in pain! X

hi....yes it is so so hard. it really is. hubby has just come home - for me to get a break - this is not a break - all i can hear is her screaming and screaming. she isn't even feeding. she is teething as well. im not coping very well. house is a mess, i feel a mess, everything feels a mess and im knackered.
carobel yes it just thickens the milk - the enfamil is thickened im not sure if its hypo-allergic as well. but the doc argued that the thickening agent already in the enfamil wouldnt work cos of the ranitidine, so we needed the carobel as well.
the ranitidine has been the best drug for us - but it loses effectiveness after a few weeks. i was hoping he would either increase the dose or give us the next drug up for her. carobel to me has been a waste of time. it might help if she actually took it - she spits it out for me when i give it to her for breastfeeds, and she is going nowhere near bottles at the minute. she has been extremely unsettled - like crying all day unless she is held. ive to go feed her now - i don't know how much longer i can do this,....i am doubting how much of it is reflux and how much is teething and how much is general upset (me and hubby were argueing a lot a few days ago.)

Do they up the dosage of the ranitidine as she grows? DD1 was on domperidone (and ebf) and it was upped as she gained weight so the drug was still effective. When it was time for her to stop taking it we just let her grow out of the dose and then stopped it a while later.

A lot of reflux babies love to be held - they are kept upright (minimising the pain) by someone they love (oxytocin gets released which calms them). Double whammy. Tripple whammy if you can get her to feed upright (try her riding your leg like if you were playing 'horsey' but have her facing you) as then she gets endorphins (natures own pain killers) and sleep inducing hormones too.

Talking to a friend the other early who said that her daughter's reflux got much worse when she was teething because of the floppy that the body produces. If she's teething it may be why she's not responded so well to the change in milk.

Floppy? Gloop. But I quite like the idea of the body producing floppy...

It really is so, so hard I know. My dd just screamed and screamed. Have you tried a sling yet? dd would ONLY be held upright over the shoulder or flat tummy to me in the sling but she hated the bjorn style one as it was uncomfortable for her so I invested in a mei tai sling which wraps and ties round, once I got the hang of it I never looked back.
She also cannot bear (even now) to be on her back so nappy changes etc were a nightmare, you just have to be quick. We also borrowed a tummy tub from a friend to bath her so she didnt have to be on her back. Either that or one of us takes her in shower with us.
Since she was 2 weeks old she has slept on her front, I realise this is against sids guidelines but it has been better for all involved, it may help you to try this.
The ranitidine is weight sensitive so you will need to keep going back to the doctor to find out what dose you can give. We were initially prescribed less than you along with domperidone but it wasn't effective so had to go back again.
Sometimes when dd would get totally hysterical it would help if one of us was holding her and stepped outside the door so she got some fresh air on her face, just to refresh her a bit and let her grab her breath then she calmed down a bit I think just from having a change of scenery.
Holding her swaying from side to side may help, dancing to music was good-
I know it is enough to send you round the bend and most people don't realise what it is like to have a baby who cries so much-it is relentless.
People will tell you it gets easier, I will also, but I didn't believe people when they said that to me!
DD is 24 weeks now, starting to wean, sick alot less and you know what- hasn't scremed in pain in weeks. She cries but much more of a whinge now rather than that awful pain shrill that you know so well.

Keep going back to doctor, stay active- movement often helps baby and it is good for you to go for a walk. Do you have a pushchair/system where she can be propped rather than lie totally flat? I used to put folded muslins/towels under pram matress aswell to raise the head.
Books/yellow pages under the cot legs/moses stand can help.

It is so, so fresh in my mind. Hang in there it REALLY WILL GET BETTER.

Give it a week, if you try a few things and see no improvement at all- it is time to look at your diet

ps don't worry about the mess, more important things

hi
thanks for all the suggestions - i do most of the things to keep her upright and have a pram which allows her to sit upright too. i have a sling also but need to start using it again - the ranitidine was being increased with her weight but very minimal increases. i don't know wether thats cos she is a small baby. like she is 11-12lb now and its only at 0.6lb started with 8lb at 0.3. 3 times a day. i will keep going back but it was only increased a week ago so there is no point at the minute.
i have already eliminated diary from my diet and that made a difference at the start - i switched to soy, i don't really want to give up soy as i have osteoperosis. really hope things settle soon.

when i tel people she has reflux quite bad they just say oh my baby had that too or every baby has that they grow out of it. i don't think they understand what its like unless theyve had it bad. it makes you feel like everyone else can cope and you can't or something! ah its true its just a phase she is going through and WILL be over soon! thanks for support

It might be worth cutting out soy too - just on a trial basis for a couple of days - as that made an ENORMOUS difference to my baby son. Just cutting out dairy wasn't enough as he is intolerant to soy AND milk proteins (they are quite similar apparently).

I know what you mean about needing milk for the osteoporosis, but you could try calcium-enriched oat milk (I recommend the Oatly brand) or rice milk (RiceDream is good), both of which are available in health food shops or in some Sainsburys stores. If you tried it for 3 days and didn't notice a difference, you could go back to soy. For us, it meant we were able to stop all meds and just breastfeed normally with no pain or reflux - huge success!

i will think about it if things don't settle down - oat milk is quite nice ive had it before! im glad you were able to pinpoint the problem for your son and it worked for you

I also take a supplement called osteoguard by lamberts to help calcium intake. My baby is 6 months now and I am starting to do some reintroductions back into my diet, so it may be worth doing it just for a short while to see if it helps with the distress and crying.
I have had 3 months very strict eating but hopefully now I can relax it a bit

i have osteocare which i take - i am sure i am taking enough calcium. i would be able to do it.
i am upset at hte minute as the baby was pulling and pushing on the breast when i tried to feed there and ive given it a ten minute break - and my hubby is expressing concern and worry that she is getting enough. he wants to wean her early and me to talk to the hv. as far as im aware, she is getting enough - hasn't dropped below her percentile. some encouragement from my dh would go a long way - but i understand his concerns too. she has feeds where she doesn't feed wel but she does make up for them at others.

I would second and third and fourth the suggestions on completely avoiding milk and soy.

My son was exactly as you describe your baby and had been treated for reflux since only 2 weeks old. He screamed all the time, it was relentless, and feeds were a battle too. I got really severe PND, and I am sure that lots of it was from the stress of his condition as it wasn't my first baby either. So, so stressful. I really feel for you. It feels like you're in a different parenting universe from everyone else ...

Anyhoo, it turned out DS was completely intolerant to dairy (not soy in his case). He was on formula from 6 weeks (big problem, but unavoidable due to my PND) and he only improved really when on both lansoprazole (see below) and on a hydrolysed formula he would actually accept taste-wise (they are mostly vile).

If you noticed a difference when cutting out dairy, then I would say there is a very high probability she has a problem with it. You would need to do a dairy and soy free trial for at least two weeks to see if there was any effect - 3 days won't be enough. If it works, it will make a huge difference to your lives so has got to be worth a shot.

However, and it's a big however, if your DD is still having formula then cutting dairy out of your diet won't really make any difference. You'd need to either stop the formula or change it to a hydrolysate one - available on prescription from GP or hospital.

If it turns out to be the case that your DD is in fact allergic to dairy/ soy then it would be completely appropriate for your GP to refer you pronto to a dietician given your osteoperosis. Then you can be ultra-sure you're getting the right nutrients while on a restricted diet.

Regarding reflux meds... those doses of ranitidine sound on the low side, but I strongly stress I haven't looked up the info in the BNF for children. It is now quite commonplace to put children with confirmed reflux on a PPI drug like lansoprazole or omeprazole. DS was on lansoprazole which is far more effective for reflux than ranitidine, and easier to administer IMHO.

I stress I am not medically trained in the slightest but I am not at all sure what your doctor meant when s/he said that there was some kind of conflict between enfamil AR and the ranitidine. I am fairly sure that ranitidine wouldn't act to 're-thin' the milk... with carobel added into already thickened milk (as the doc recommended) I would be very surprised if any baby could suck the milk out of the bottle, unless you had enlarged the teat significantly or were using the fastest-flowing vari-flow teat on the market - it would be like wallpaper paste!

If she is following her percentile line then she does not need early weaning or introduction of more formula. She is absolutely getting enough. If she has a milk/ soy allergy, more regular formula could make things lots worse, not better (unless it's hypo formula).

Stay strong. It's awful, but there may be light at the end of the tunnel with a few changes here and there.