baby can't tolerate formula at all - help!

[MizZan]

Would appreciate any advice...

our now 5-month-old DS2 (he was born at 32 weeks, so effectively he's more like a 3-month-old) has been fed exclusively with EBM - could not breastfeed for reasons too long to go into here.

in the interest of keeping up with him (which I'm having trouble with) and freeing myself up from constant pumping, we've tried him several times now on formula mixed with EBM - first we tried a preemie formula called nutriprem2 and mixed it with 2/3 EBM, 1/3 formula - which made him throw up a little the first two times we tried it, and then a lot on the third and fourth feeds we tried him on (these were a day after the first two). We gave up on that and then yesterday tried him on 140 mls of EBM + 25 mls of regular formula (Farley's) - he drank it all and then vomited it all up about 5 minutes after finishing. after vomiting he seems perfectly fine and happy though, so once it's out of him it doesn't seem to cause any further problems.

what to do? I thought he might perhaps be milk intolerant but firstly this reaction seems extreme for something as simple as intolerance, and secondly I have tons of dairy in my own diet and it doesn't seem to affect him. he was diagnosed with reflux while still in hospital and is currently on two anti-reflux drugs (Domeperidone and Ranitidine), but in very small doses, and tbh even when in hospital and not yet on the drugs, he never vomited up feeds in the way we've seen him do with the formula-mixed ones.

thoughts or suggestions, anyone? we will probably try soy formula but if that doesn't work, I'm really at a loss as to (a) what could be the problem and (b) how to move forward as I am having a hard time keeping up with him by exclusively expressing.

You need proper medical advice, are you under a paed because he was premature?

Our SBCU thought DD1 had relux while in SCBU and she had some stuff mixed in her milk to thicken it and make it stay down. Can't remember the name. I am guessing that your DS is still under the peads. at the hospital so would phone them and ask advice

hi - we are not under a pediatrician from the hospital, they said that once baby was discharged they could no longer do anything for us . they also gave us a lot of misinformation while we were under their care so I am not inclined to bang on their door anyway. we have a private pediatrician we could call but am not sure he will have much to suggest, just thought I'd try here in case anyone had ideas or relevant experience.

the stuff you added to thicken the milk was probably Gaviscon. we were giving him that for a while (after the feed, not in it) when he was first discharged from hospital. however we have stopped as we've been trying to slowly wean him off meds, and he is absolutely fine taking EBM without it. this is what makes me wonder what's going on with the formula. if he had trouble keeping any kind of feed down I'd say yes, it's a reflux problem. but that is not the case.

If the paeds are no good you could ask your GP to prescribe some neocate or some nutrimigen. If your ds have the same problems with is sick after that then at least it's ruled out intolerance or allergies, and they can get on with other tests.

thanks for the suggestion bobbybob, will try that.

BTW - we were recommnded stuff to help with lots of throwing up (breastfed only though) to thicken a feed and it wasn't gaviscon - it was called carobel I think. You can buy it at chemists. Didn't work for us though

There's also stuff called staydown. My neighbour got it for her dd but did find it a pain because it had to be given very shortly after the feed was made up, no making 24 hours in advance!

hi my dd had dairy allergy and threw up formula though not bm even though I ate loads of dairy. I'm sure it affected her (me eating dairy and bfeeding) but not so badly. She also used to get hives (like nettle rash) where the formula touched her. Agree, nutramigen or neocate are the way forward.

hi there formula is far harder to digest than ebm, so it stays in the stomach for longer and is more likely to make babies with reflux throw up. But there might be a problem with food sensitivities too, about 60% of babies with reflux are sensitive to cow's milk and soya (according to a highly respected paediatric allergist who I saw with ds2).

Your son might not have had reflux so badly when he was in hospital, sometimes it doesn't appear until a few months after birth.

It's very likely that the doses of domperidone and ranitidine are too low for him - doctors in the UK tend to under-dose, partly because they dont' really understand what's going on with reflux and they are a bit wary of giving babies high doses of drugs that aren't even licensed for use with infants. But imho they might as well give doses that actually work.

I am horrified that they have not arranged for any more help once you were home, reflux babies need regular checkups, partly because the doses have to stay in line with the babies' weight, partly because the drugs sometimes stop working, I could go on.

Here are some sites that might help you
\link{http://health.groups.yahoo.com/group/breastfeedingreflux/\reflux babies} (A uk-based discussion group, the message boards are not very active but they have some good info)
\link{http://www.pollywogbaby.com\pollywogbaby} has a very good document with info for parents of babies with reflux. Click on the link in the middle of the page, under the picture of the red-faced baby.
\link{http://health.groups.yahoo.com/group/breastfeedingreflux/\breastfeedingreflux} is an international discussion group for mums of babies with reflux who are feeding their babies breastmilk to any extent (including ebm)
\link{http://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1\infantreflux.org forums} are also international and very busy, this link should take you to an introductory message from Laura which has loads of great information.

If you don't mind, I would advise you take him to your GP for a referral to a specialist paediatrician re. the reflux, or go directly to a private one (Dr Mike Thompson at the Portland is very good). You shouldn't be left on your own to deal with this.

If you haven't done already, you could also try hiring a hospital-grade pump for the expressing. I did this for several months with ds2 and it really made a difference. It's about £30 a month, if I recall correctly, but that's not too bad if you offset the cost of formula.

Oh, and I don't know how frequently you're feeding him but you could try more frequent feeds and smaller volumes. Ds2 never managed to take much more than 120 ml from a bottle, even when he was close to 1 yr old. Reflux babies often need small, frequent feeds.

Just so you know, ds1 was in special care for a while (although not premature) and has a cow's milk and soya intolerance, and ds2, who is 20 months now, has had reflux since about 2 1/2 months old.

I don't check mumsnet very regularly (although I've been on here quite a bit recently) but I'm happy to correspond via e-mail if you CAT me.

thank you everyone for advice. mummypig I was interested to hear your experiences. we do have a private ped (from the Portland, even) who is great but because he was not involved with our baby from the beginning (we don't live in London and baby was born very unexpectedly at hospital in our home town, where he then stayed for 2 months), he has been reluctant to get involved with stuff like altering existing prescriptions. TBH we thought we had the reflux more or less licked since he's been fine taking EBM with just his current meds, so this reaction to formula kind of caught us out. maybe we need to up the dosage in order for him to tolerate formula - hate the idea of doing this though. maybe I just need to be pushier with our private ped about getting him to take over prescribing etc. for our son since the local hospital has basically said "goodbye and good luck" (this after he got colonised with MRSA there as well - we love them - not).

I didn't realize they could end up with soya allergies as well. I know EBM would be the right thing to stick with if we could continue, but am really finding it impossible to keep pumping 6-7 times a day with our older child needing some attention from me as well (not to mention my husband, not to mention I'm also meant to be going back to work soon, how that will happen I do not know). don't have a hospital grade pump, have never used one (our hospital certainly didn't have any!) - would it really be that much better than a standard electric double pump (I have an Ameda Lactaline)?

I think you need to go back to the GP or the paed

he's very little still

there are lots of hypoallergenic formulas (like nutramigen etc.) that they could prescribe for you

it also could be that his gut doesn't handle the manufactured stuff very well. Although dd had a dairy and soy allergy at around that age (which she outgrew by 2), I never thought it was a true allergy (it never showed up in tests) and always thought it was more to do with her digestive system just not coping very well (she too had bad reflux).

Hi again MizZan, yes the hospital grade pumps (supplied by Ameda Egnell) are better than anything you can buy yourself and you will probably be able to cut down on the number of times pumping a day, plus it doesn't take so long each time either. You should be able to hire them from local NCT contacts, if not I'll try to find a different source. You've probably also looked into galactogogues (for increasing milk supply) - kellymom.com has some good pages on them, I've always found eating porridge and drinking fennel tea to help me but I know that may sound like a bit of an old wives' remedy! I managed to keep pumping when ds2 went to nursery although he never took as much as when at home, but then I ended up taking leave of absence from work (nearly 1 yrs worth) as it was pretty difficult trying to deal with work when worried about ds2 and to be honest he was my first priority.

Even if your paed doesn't want to change the prescription, the doses of both domperidone and ranitidine are calculated per kg bodyweight, so he should be changing the dose as your little one grows. \link{http://www.webgerd.com/GerdTreatmentInInfants.htm\This page} shows the recommended dose range for ranitidine is 4-10 mg/kg/day and it's given in 75mg/5ml syrup, so if your ds2 is 6kg (say), he should be on at least 24mg a day, which would be about 1.6ml total, probably split into two doses of 0.8 ml each. It's harder to find recommended doses for domperidone but I think my ds2 was on about 3 ml three times a day at 7 months old - would have to check the growth charts to see how big he was then but he was on or below the 9th percentile.

Also the body reacts to ranitidine by growing more proton pumps in the stomach (these produce the acid) so it eventually stops working and if the reflux is still there (and the throwing up implies that it is) he would need putting onto a different drug in any case - usually a PPI. There's more information on the links I put in my earlier message.

I really suspect this is a reflux problem, and as I said in my earlier post ebm is far easier digested than any formula and this is particularly applicable to babies with reflux. Many paeds don't know that much about reflux, even if it is quite common, so if you don't get anywhere with your current one you should look for a paediatric gastroenterologist.

Best wishes to you and your family, especially with an older child too, if you're anything like me you'll be feeling really guilty at the lack of attention ds1 is getting currently.

hi mummypig, thanks for your reply. Clearly you have been through the wringer yourself with the reflux problem as well. You're not kidding about feeling guilty about DS1! Not much to be done about it though.

well, the good news is, we are making progress as small amounts of Wysoy seem to be staying down and not causing any major problems. Am giving 30 mls. of Wysoy before two of his usual daily feeds of EBM (which are scaled back accordingly) and no instant vomiting reaction. He's had 2 very small vomits today but one was after a 100% EBM feed so I don't think I can put it down to the formula effect, though we'll keep an eye on it. So it looks more like a milk allergy issue than the reflux, at the moment. I am very happy that we are finally (I hope) on the right track. We will go very slowly with increasing the amount of formula we give him - am really aiming to have him take just the equivalent of one feed a day in formula, just to take a bit of the pressure off me as far as expressing.

thanks for helpful info re the domperidone, ranitidine etc. TBH the general advice we were given was that if he seemed ok without increasing the dosage, then we should just let him "outgrow" his dose. And indeed, we thought all was fine until this experience with the formula - I think the fact that he was tolerating EBM just fine with only a small dose of medication lulled us into thinking he'd outgrown all his problems. I guess not yet. Keep your fingers crossed that soy is the answer...

I am taking domperidone myself to increase the milk supply, so he gets some additional domperidone through that. I just read the thing about oats so will have to start trying that too. Not sure I can stomach fennel tea...

Hi MizZan

Get your doctor to prescribe a hypoallergenic formula. We have the same problem although dd is now 16wk. We have tried her on soya formulas twice and it was like she was a different baby. There are a few issues with soya formulas one being that it isnt nutritional enough for babies under 6 mnths, despite the tins saying from birth.I have had several doctors tell me different things but they all seem to be on the same page now. We have just tried nutramigen and it hasn't worked for us so we are now going to try neocate.

Good luck