5 wks old, reflux, lactose intolerance, slow weight gain...advice needed! (Bf with one ff)

[MissRatty]

We took our LO to hospital last night at the advice of our out of hours service, as he was doing watery mucousy blood streaked poo. They have suggested a lactose intolerance, so today I shall be starting to remove dietary lactose from my diet.

LO has one formula feed at night, aptamil, but in hospital it was noted he's slipped down percentiles for his weight, which he was gaining slowly anyway. This has upset me lots as he is literally never off the boob and cluster feeds like crazy. He never seems satisfied after boob, and has started getting fussy and unsettled even during feeds.

Reading around this can be under or oversupply, so anything I do could make the other worse, and there seems no scientific way to see what is going on in terms of my supply.

We're going to the well baby clinic this morning, but we will more likely introduce more formula...however I intend to pump at these times so my supply doesn't drop too much. This may also be good for me as we both have thrush and I have had mastitis five times in the five weeks he's been here! It will give my nipples a little break I hope.

Essentially I'm wondering if anyone else has similar experience, how long it took for symptoms to improve, hints and tips, formula recommendations etc...at our wits end!

Has he ever been checked for tongue tie Ratty? Is there a Bfing Support Group you can get to to discuss the possible slow weight gain and check for tongue tie?

When you say they are concerned about his weight gain, how much is he gaining in a week?

Could you also talk to a BFC about his weight and top ups? If he is lactose intolerant, personally I can't see how adding more formula is going to help but you need to discuss this with a BFC, have you got the helpline numbers?

There is some info on allergy uk about dairy and babies and Kellymom has some good information on food sensitivities in babies.

I second the advice about seeing a bf specialist. They will have much more training than hospital doctors or HVs about bf. Formula is also made from cows' milk so I can't see that adding more Erik help if baby is lactose intolerant. Has baby been checked for tongue tie? Would be good to get latch checked.

I second the advice about seeing a bf specialist. They will have much more training than hospital doctors or HVs about bf. Formula is also made from cows' milk so I can't see that adding more Erik help if baby is lactose intolerant. Has baby been checked for tongue tie? Would be good to get latch checked. If you have had mastitis so much that might suggest he's not sucking very effectively? Also it's common to get thrush after antibiotics for mastitis so check out the y thrush treatment leaflet from the breastfeeding network and make sure you are being effectively treated. You can take a probiotic if you need abs again to try to ward off thrush.

Sorry for double post, damn phone.

couldnt you pump to get an idea of your supply? i know babies are more efficient at getting the milk out...but u might get an idea. for example, if i don't breastfeed and pump i can get 4-8 ounces...so I know my supply is okay. You could try pumping to see how much you get out?

if you are breastfeeding then it is absolutely pointless to try and remove dietary lactose from your diet as breastmilk is full of lactose with it being the sugar present in all milks! It is more likely to be a problem with cows milk protein which you can remove from your diet. It would be pointless giving cows milk based formula as formula is made from cows milk and will be full of cows milk protein.

I would remove the formula from his diet (unless it is a hydrolysed/non dairy formula) and concentrate on breastfeeding if thats what you want to do. You could then look to remove dairy from your diet.

Really don't think pumping is a good indication of supply is it? My DC were both well nourished but I could hardly express more than a couple of ounces.

Lactose intolerance is different to cow's milk allergy/intolerance...formula contains the same amount of lactose as breastmilk, but foremilk has a higher level of lactose and is why oversupply can be an issue as it overloads them with lactose.

There are lactose free formulas though, but Neocate seems to be the only one with no soy in (not a fan of soy as its an endocrine disruptor).

He's been checked for tt and his latch has been checked as well...

Every time I see something that could be a cause for his discomfort I latch onto that thinking "aha, maybe this will make a difference" but it doesn't!

He's on infant gaviscon and ranitidine for the reflux, and I was thinking of trying some colief as that has lactase in it, so could assist...by breaking down the lactose.

In terms of expressing, it varies each time I express (have a machine). Sometimes I'll get nowt, sometimes I'll get a good few ounces between both boobs (3 ish).

Sorry if I caused confusion...I was going to eliminate dairy as I had read that lactose intolerance can be confused as cow's milk intolerance/allergy...and as he hasn't actually been tested for either I was going to try it to see if it helped. You'll try anything if you think it will help!!

Who checked him for the tt? It's notoriously easy to miss.

Sorry as well...I have cross posted with some people! I never take expressed milks as an indication of my supply as it varies so much each time...but I am worried about the lack of significant weight gain. A few weeks ago he was gaining about 180g a week, and that has dropped to 190g in two weeks...

It makes me so sad as he is literally never off the boob...and he's super cluster feeding at the moment, so the other day he was on for five hours...non stop, and was still hungry after, but he was due his night ff by then and he did settle after that.

I feel so inadequate!

He was checked at birth, then my father in law checked (he's a gp). I'll ask them to check again today...third opinion may be useful as I know it can be missed.

No disrespect to the MWs or you Fil but unless they are very experienced with tt, its unlikely they would have seen it, especially if it is a posterior tt.

It was the paed who said he didn't have it before we were discharged. Just seen the HV at the clinic who has recommended more winding as this may be why he's unsettled after food. His weight has dropped from the 9th to 2nd centile so she has said to top up with formula after each bf if he still appears hungry and to keep expressing. She also said his marathon feeds of even 1.5 hours is too much, and to remove him after 45 mins and top up, as my boobs are getting annihilated. Not to offer the other boob as his poo is green so too much foremilk, keep him on the same so he gets more of the high calorie hindmilk.

Again the Paed is very unlikely to know much about bfing as is your HV. I really think you need to speak to a BFC today. The HVs advice is out of line with current guidelines. Your Lo has only gone down one centile which is well within the normal boundaries and shouldn't be a cause for concern. Also, if she is advising you to top iup, I think the current advice is to top up with either ebm or formula once a day, which you are already doing.

I think you've been getting very mixed advice, even from the same health professionals tbh and you would probably benefit hugely from speaking to a lactation consultant or someone who really knows about breastfeeding.

Firstly (having had mastitis myself rather a few times) I think that if you've had mastitis 5 times in five weeks then it's very possible that there is a tongue tie/latch problem and that maybe you also haven't been given a long enough course and/or the correct antibiotic to treat the mastitis. The green poo could well be caused by the antibiotics too.

Has it also been explained to you that there are two types of lactose intolerance? Primary (which is congenital) and secondary (which usually occurs after a stomach upset or similar). The latter of which resolves itself over time and the prior is usually extremely serious and usually leads to hospitalisation in the early weeks.

The midwives advice regarding poos/when to feed/how long to feed/fore milk/hind milk seems confusing to me and tbh, doesn't really make much sense going by what you've said here, although of course, she may have information we don't.

I really think speaking to a good lactation consultant or breastfeeding counsellor who is also experienced in tongue tie would help you.

Sorry, HV, not midwife.

Oh poor you, so much conflicting advice already.

I also think there is very likely a tongue tie (probably posterior) going on. And/or possibly a cows milk protein intolerance.

Are you able to see a lactation consultant/breastfeeding counsellor who actually specialises in tongue tie? Drs tend not to be that great at spotting them tbh (they often check for anterior tt but not posterior which is harder to spot and less well known). If you have the funds, a private lactation consultant would be the best and quickest bet for you.

Lactose intolerance is very rare in babies, far more likely to be cows milk protein intolerance. Best bet to check for that is to keep BFing, go completely dairy free (so cut out the formula, and go totally dairy free yourself) for two weeks and see if there is an improvement. It's hard work doing this though so I'd get the tongue tie checked first.

Formula will likely make him worse if it is cows milk protein intolerance. Yes there is neocate which doesn't contain cows milk protein, but it tastes foul and many babies reject it, also it's very expensive unless you can get a prescription, and not as nutritious as breastmilk or normal formula, so not an option to be taken lightly.

Green mucousy poo can also be caused by a virus - does he have any signs of having a cold or any temperature?

You have so much going on haven't you I think you really need to talk to a breastfeeding councillor or lactation consultant. You could also ask if your local hospital has a infant feeding specialist. all off these people will be able too help you much more then we can.

I'm concerned that you say you've been diagnosed with thrush, although this could be due to the antibiotics. it'squite uunusual in a baby this young. Have you ever had pain free feeding? if not then I would question if it really is thrush and not some other problem.

As others have said mastitis 5 times in 5 weeks screams poor attachment to me, as well as long feeding and low weight gain. weather this is TT or another issue it needs to be assessed by a professional with excellentbreastfeeding training.

I would also be wary of adding in more formula, As it sounds like your baby could be cows milk intolerant. Formula will make things worse. cows milk protein intolernces can cause secondary lactose intolerance. And as someone else has said you would know if it wasprimary lactosre intolerance as your baby would have been very ill from very early on.

Really please don't limit time at the breast I understand why they sometimes recommend it but fixing a'my latching problems will negate the need for this. So goodbreastfeeding is what you really need right now.

My nephew was intolerant so spent his milk days on Neocote (?) it's a formula by Nestlé but it's prescription only. He would be sick after breast milk so had to go on the Nestlé milk

To be honest it sounds like the advice you have already had is quite poor. How could you simultaneously have an oversupply leading to baby having too much lactose and also poor weight gain? How could anyone saying your baby is possibly allergic/intolerant to lactose/cows milk tell you to therefore increase the amount of cows milk based formula?

Definitely try to get an appointment with a breastfeeding specialist either by speaking to the helpline or gong to a clinic or baby cafe. Unfortunately most HVs and even most paediatricians know next to nothing about breastfeeding and tongue ties.

I have two children both with significant lip ties and possible posterior tongue ties, every HV and paed they have seen have not spotted it until I pointed it out. I am very lucky to have a large oversupply so they both put on weight, if I have a normal or low supply we would have been stuffed.

Yes, I should point out that DD's tongue tie was missed by her paed despite her spending three weeks in hospital after birth (she was prem) and being very difficult to feed. In fact one of the hospital nurses told me she definitely didn't have TT . Goes to show, you need a LC or BF counsellor to spot it really.

To be fair it was a lactation councillor who suggested oversupply! I might also add that another bf consultant I saw said there were 2000 calories in an ounce of breastmilk and that a five hour long feed was normal.

So I have seen someone in pretty much every field now and each have said something different..the bf consultant even peddling total bull poo! Would or should the LC or BF consultant not have checked him for tongue tie if they thought that could be an issue?

In fairness, having seen them all, the hv seems to have spoken the most sense, in expressing after feeds, and offering this first after a boob feed if he's still unsettled, and when that is gone offering formula. We've done that twice today and LO seems much more settled and rested, and less crying and more alert times. I just hope it will add the weight on.

I'm going to the BF group on Tuesday as well for some additional support.

Do you really think there could be a TT when so many people have seen him? His latch is ok, and he's only just been fussing at the boob since he's had thrush. I just wonder who else I could see or ask to see without appearing to undermine everyone i've seen so far...

Babies...a non stop worry!

Oh dear what rubbish from the bf counsellor, how disappointing. yes, the LC and BF counsellor should have checked for TT, it's possible however that they aren't trained to check and so didn't. I saw a BF counsellor in hospital with DD, but she never even mentioned TT or looked in her mouth. not all Bf counsellors are created equal sadly.

How many people have actually looked in his mouth? As that's the only way to check for a TT (and even then, you need to be trained to know what you're looking for, esp re posterior TT).

If you're able to express EBM for top ups that suggests the problem is probably not your milk supply - rather, it's that he can't get it out of your boob for some reason. Frequent mastitis also strongly suggests you have the milk, it's just not being drained from your boob properly. That suggests tongue tie or bad positioning/technique to me. With the number of people you've seen, I would think your positioning/technique must be perfect by now! So, that leaves tongue tie...

He doesn't have a temperature (we were in the children's assessment unit at the hospital to get checked out). They've taken bloods for viral and bacteriology.

His latch has been checked a number of times, and is apparently good. I haven't been limiting time at the breast until today. I am reluctant to accept that five hour stretches with a good latch are fine when the weight isn't piling on...if it was I wouldn't mind!

From today i've just been doing as the hv suggested and winding when he falls asleep at the boob, putting him back on and if he's still screaming in hunger after 45 munutes then offering the ebm, followed by an oz at a time of formula until he seems satisfied. It's worked so far, but is very early days. I'm going to the clinic at the hospital next week and the hv is comingout again on monday.

The medication regime is a nightmare too...colief at every feed, ranitidine 3 times a day - 20 mins before food, gaviscon 6 times a day (but not within 2 hrs of ranitidine and given mid bf), nystatin 4 times a day, clotrimazole three times a day...AAAGH!