lactose intolerance in babies

[Piggy2310]

Has anyone else had a baby who is lactose intolerance? My little one is 4 months old and has got Congenital lactase deficiency (a genetic form of lactose intolerance) she is exclusively breastfed with the use of colief lactase enzymes. We have been referred to a dietitian and paediatrician and were told they should be InTouch shortly as she was so young, however we still haven't heard anything. The GP can no longer help us as they are not allowed to prescribe the lactase without paediatrician approval and not allowed to give advice without a dietitian. They have already chased the referrals up too.

She is really struggling with reflux and weight is dropping up and down on the percentile chart, month to month. I know babies that have this issue are normal given a thickener to put in their milk but obviously due to me breastfeeding I am unable to do this. I also know people who have tired the thickener with babies that have allergy's or reflux in cases where it has not worked can be advised to wean a little earlier (5 months). I'm a bit stuck now on what to do as I do not plan to stop breastfeeding nor do the doctors want me too, but at the same time I am not getting anywhere with the referral's.

I have done a bit of research into baby rice and have found that it has got no nutritional value and that it is basically a thicker version of formula. I have found that it can massively help babies that have allergies and reflux without causing any negative affects to the digestive system. Instead its given the gut some thicker substance to reduce spit up. It has also been proven that babies with a lactose intolerance find thicker substance helps massively as it helps the body break down the lactose more easily. Obviously if this were a thing I were to try it would be a tiny amount every other day or so, and would not "wean" until she was 6 months old.

In the meantime I have chased up referrals again and will be booking another doctors appointment to try and figure something out.

What you are describing sounds more like CMPA then lactose intolerance. If you are breastfeeding, have you cut all dairy out of your diet?

Seems a bit bizarre to BF milk to a lactose intolerant baby but I’m sure you’ve done your research on that front.
my son was lactose intolerant from tiny and thrived on soya formula with carobean (cow and gate) thickener. The gaviscon thickener was horrible, didn’t work and made him very constipated ☹️
im sure you know already but if you do go onto bottle feeding you’ll need a bigger teat with the thicker formula and always swirl the formula - thickener mix into the water before you shake the bottle or it all clumps in the teat.
try and keep her upright as possible.
good luck xx

The thickener isn't to do with lactose intolerance though, it's for reflux.

If you are breastfeeding your baby, then there will be lactose in your milk. So baby will struggle to digest it. You can buy co-lactase drops to help baby digest it.

If she is losing weight, it may be worth trying a lactose free formula top up to maintain weight.

What happens if you switch to a soya formula which will be lactose free?

My 9 week old daughter has reflux and CMPA. We had to wait for referral from paediatric dietician but this was very quick and she was seen in about 2 weeks after GP appointment.

Just a thought, could the GP not prescribe some infant gaviscon whilst you wait for your appointment to come the through? It can be given to breast fed babies as a paste before you start feeding.

Op wants to breastfeed though!
Think carobel thickener can be used if breastfeeding @Piggy2310

Ps. In regard to constipation, gaviscon can do this so what I do is give my little girl like a third of the dose recommended and do it like every other feed. This means she can keep the milk down to gain weight but avoids the constipation

CMPA is impossible. I have a cow milk allergy so cannot eat anything that contains milk as i go into anaphylactic

So if you don't eat dairy then your baby isn't getting lactose, so I don't understand how she's getting lactose. Am I missing something?

All mammalian milk contains lactose!

That sucks.

Its completely normal to breastfeed a lactose intolerant baby, with the use of enzymes. In my original post I sated we are breastfeeding and using lactase enzyme drops. we will not be switching to formula as in herself she is happy and we have no reason too.

Reflux is one of the symptoms of a lactose intolerance so even if you give a lactase enzyme some symptoms will still be present.

I have been told by the GP that are unable to prescribe anything without the paediatricians/dietitian approval, the referral has been sent for both and been chased up but we are both still waiting for a response.

I am completely dairy free, I am severely allergic myself and go into anaphylactic shock. I am also lactose intolerant so I do not eat goats milk or anything containing lactose either.

thank you

All milk contains lactose, whatever the mammal producing it. That includes humans.

I'm lactose intolerant so exclude dairy. It vastly improved my asthma and hay-fever. I suppose I assumed if you weren't eating it that your child wouldn't have lactose but hadn't realised your own body would put it in your milk.

I'm sorry it's like this. I hope you can get it sorted out soon.

I would stamp your feet abit. Often if u badger them it helps (shouldn’t have to but u do) what ur asking for is, I feel, specialist advice u deserve to be given from said specialist and the baby needs the info now as it could massively help them so ring up/ make a complaint/ go in until they get you what u need. Hope ur gp sorts the referral out for you sharpish. Good luck

Thank you for your reply. To be honest this is one of the things I needed to hear.
I'm trying my best😞 so far I've rung my doctors every week since January!

Who diagnosed the lactase deficiency if you haven't yet seen a paediatrician? And have you fully excluded soya from your diet?

The GP, it was diagnosed through stool test! and yes as i don't eat soya anyway, i never really have as not advised if you have a CMPA. X

The problem is that the stool test is unreliable, so much so that most hospitals stopped processing them years ago. Partly that is because the overwhelming preponderance of lactose being picked up in the stool was due to secondary lactose deficiency (often CMPI/A, but also after infections) rather than congenital lactose deficiency which is really rare, and which you would not expect colief to be able to make much difference to. The only recognised treatment is a lactose free formula. And babies who don't received that tend to do very badly. So if this is congenital lactose deficiency, you really need to urgently see a paediatrician. And if it isn't, then someone needs to work out what is going on. Did your GP share with the paediatrician that you were not only exclusively breastfeeding, but that you were completely dairy and soya free? As if not, they're probably assuming it's just yet another CMPI with secondary lactose intolerance, which would be far less urgent.

Im sorry but i came on here for advice not for people to question what is wrong with my daughter. Ive have done tones of research on this and confident in my findings. This has been an on going thing since birth: after her being hospitalised, having severe jaundice, doing process of elimination and it making no difference, but as soon we tried the lactase enzyme it stopped majority of her symptoms. There have been lots of other leading factors that have led to the diagnosis however i didn't put this post on here to explain all this and was simply asking, if anyone else has had a abby with this condition and for advice on reflux and giving baby rice to help!

if you do your research you’ll find that you can still breastfeed a baby who is lactose intolerant depending on the severity!

@Piggy2310 you can buy carobel online so it doesn't need to be prescribed. It is specifically for reflux

Oh this sounds so tough, OP! You can give infant gaviscon to a bf baby - you basically mixed it up after the feed and given by spoon. It's faffy but can be done. So it might be worth asking your GP about that whilst you are waiting. I found if you give the full dose, it causes constipation but half a dose settled both my DDs reflux whilst not causing them too many constipation issues.

Other than chasing the GP, could you consider a private paeds consultation? Do you or baby's dad have private healthcare through work? Or it might be worth the £300 or whatever one off cost to see someone and at least get the ball rolling.

Do my research? I’m a paediatrician trying to be helpful.

I'm sorry if i come across harsh but i am just trying to get advice on the reflux. Instead some people are debating the problem. Like i said there was numerous factors that led to diagnosis, and I'm not saying that the paediatricians were not involved, as they were but we are awaiting a face to face appointment with them, that is taking forever. The doctor and paediatrics have been working hand in hand but are not allowed to help further until i have had an appointment.

she had a mild primary lactose intolerance, NOT SEVERE therefore they have advised to keep breastfeeding with use of lactase drops that i have to buy myself temporary unless baby is unhappy!

the reflux is just one of the symptoms that has not and wont fully go away as the lactase drops wont solve everything but was wonder If anything would help

I will defo mention this next doctor’s appointment. Neither of us work, both of us are parents with disabilities, sadly this isn't an option for us

thank you for the help xx