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!

good god that is a nightmare! I remember doing colief and ranitidine (both red herrings as it turned out, the problem was actually tongue tie all along)

I'm returning to my other thought which was cows milk allergy. Does he throw up much? Seem in pain after feeds or when laid down? How is his poo generally (apart from the recent green/bloody poos).

There's a tongue tie thread somewhere here which shows sadly just how often tongue tie is missed by numerous health professionals when the baby/toddler/child has been checked multiple times. I find it impossible to believe tbh, that with the problems you've mentioned there isn't a tongue tie or latch problem. FWIW, so many health/BF professionals told me with DD that the latch was fine. It was only really when DS was born I found out what it was like to feed when a baby is properly latched from birth. It was a totally different (and pain free) experience.

is what needs to be done to check for a posterior tongue tie.

Anyone who hasn't done this, hasn't checked properly.

Google Dr Kotlow, he is a world leading expert on ties. Allergies and intolerances are very common in tied babies/kids/adults.

Other indicators are looking at the lift of the tongue during crying. If it doesn't lift much, or curls at the edge, there's a pretty good chance that it's because the tongue is restricted.

Well I'm not sure who will be at either of these clinics next week but i'll ask them to check for tt as well. In the meantime we'll go with the boob, ebm top up followed by formula top up if the ebm runs out (only so many hours in the day for having either a baby or machine attached to one's nipples!). By the time i've fed, winded, burped put him back on the boob and expressed, its time for the next meal! That's without offering top ups as well. Luckily the last two boob feeds have knocked him out so we haven't had to add the top ups, so we've only done two top ups today. We'll just carry on to do them only after he's fed for a long time and is still unsettled and still rooting.

I do know that he has an exceptionally long tongue (like his mother...I almost made the Guiness records!), as he does stick it out a lot.

Feeding is never painful...only when he had had this thrush which I assume is affecting my nipples. I do get sensitive nipples after marathon feeds but its sensitivity as opposed to proper pain, and is probably to be expected after a few hours of constant suckling.

The length of the tongue is not really relevant though, neither is sticking it out!! DS1 could stick his out pretty far, it looked completely normal to the untrained eye. It was the back of his tongue that was restricted and he could not do the full up and down movement required to extract milk efficiently from the breast. It never hurt to feed him, but like you, we had marathon feeds and I never once saw the milk drunk look that people talk about.

DS2 is also tied, but not anywhere near as severely as DS1. He fed like a champ, but is having a few speech problems because of it. His tongue is really long, it almost reaches his chin when he sticks it out, but he can't stick it straight out, it always goes down the way because of the restriction. If I'd known what I know now about ties, I would have had no hesitation to get both of them done at birth.

He definitely gets milk drunk now and again...which is why I'm not convinced by the undersupply theory, or oversupply (due to the poor weight gain). I will ask at both clinics next week if there is someone there who can verify any tt, or recommend who can check.

I'm a bit miffed that it hasn't even been suggested by any HCP if it is so common.

I would add that there were never any issues when LO was born, it has only been the last three ish weeks, aside from growth spurts where I expect him to be feeding more.

Its the fact that he's so unsettled after feeding and seems in discomfort (squirming etc) after eating that made me lean more towards the lactose intolerance theory, and seeing as he has reflux as well, I was thinking that could have been what is causing the reflux symptoms.

Its all so draining though!

And thank you everyone for your replies as well.

Tongue tie can also cause reflux like symptoms. Sometimes a lot of air can be swallowed during feeding which then comes back up bringing stomach contents with it.

look at the article on this list about reflux/colic due to ties

oh dd used to squirm sooo much after feeds, and woke up all the time with wind. I believe it was all caused by swallowing air due to the TT.

the long tongue is another red herring.... I was told by a NICU nurse that dd couldn't have TT as she was always sticking her tongue out miles. Wrong.

Hope you get to see someone who can check properly for TT soon. if only to be sure you can rule it out.

Agree with mawbroon. Everyone was convinced my DS had reflux, it wasn't until his front teeth came through that we realised he had upper lip tie and tongue tie.

We were in a similar situation years ago. In the end we saw Dr Hay at Portland Hospital, which helped us a lot. He also referred us to breastfeeding advisor. It was a stressful time. There was a time with very little weightgain and even dropping down the charts a lot, but dd was otherwise very alert and healthy. Also continuously feeding and when not feeding I was expressing because GP and HV kept advising to stop BF and to FF. In the end it turned out I had massive oversupply (we rented a proper breastpump as used in hospitals, which makes expressing a lot easier). We only saw Dr Hay in the end rather than also GPs and HVs as the latter kept giving conflicting advice. Dd had terrible colic and was difficult to wind, colief helped a little but in the end she grew out of it.

I think that you get too much and too different advice. You need to find a doctor you trust and stick with him/her. If you see the same doctor all the time then he can keep a close eye on your baby and reassure/interfere whatever is appropriate. If you can afford private then this is better as the doctor can spend more time. Dr Hay is a paediatrician which we preferred as he would more likely to pick up on any problems than a generalist. Many NHS hospitals also have paediatricians who take on private patients, just a matter of phoning around.

what about dropping the gaviscon, it's only thickner and doesn't do much anyway unlike the medication to reduce acidity. It would make like a bit easier for you, keeping your baby upright for 30minutes after a feed have been proven to be just as effective.

some things are a bit puzzling, has the weight gain always been poor? reflux and milk allergies often only show after a few weeks but with TT you'd expect the weight gain to have been poor from day one.

A good midwife should have been able to diagnose this but it isn't often looked for. The only person I would truly trust to rule out TT completely would be someone who's trained to snip it. So a trained LC or an ENT consultant who believes in sniping them.