Forum Breastfeeding

Breastfeeding and KMA or lactose intolerance

14 replies

Ezkimo
Are there any moms who have experience with breastfeeding and a baby with KMA or lactose intolerance? Our little man has to come in on Thursday for a reflux protocol. They're going to measure the acidity of his stomach and test for allergies. Our midwife suspects KMA or LI and mentioned stopping breastfeeding. I'm panicking right now because I've worked so hard to get our little guy to breastfeed (first he wasn't strong enough to maintain suction, then pumping due to insufficient milk production...).

Replies

  1. Hartje #2

    If you eat like you made it yourself, you're good, right? Then you can just keep giving it away, for example.

  2. Lies #3

    My daughter had a cow's milk allergy. I ended up stopping breastfeeding without us even knowing why. I had cracks on my breasts, only cramps, eczema, hidden reflux, etc. Then switched to the bottle but still with cow's milk because we didn't know yet.. 2 weeks later switched bottles again because it wasn't getting any better.. 2 weeks later she got a rash all over. And from feeding to feeding, sleeping for half an hour and terrible hiccups. Yeah, then switched to special formula Pepti. What an invention, I tell you.... within 2 weeks she was free of her symptoms!
    You can go on a diet yourself but then you have to make everything cow's milk free..... and that's quite a puzzle. Reading labels etc.

  3. Ezkimo started this #4

    Avoiding cow's milk is not a problem in itself, but according to my midwife, there's always lactose in breast milk, even if you watch what you eat. So I'm afraid the problem will persist if I start avoiding these foods. However, I'd rather not switch to formula only to later realize I could have continued breastfeeding. I have nothing against formula, but I made a conscious choice to breastfeed because of its benefits.

  4. Hartje #5

    Then I’d wait to see if it’s really CM first. You’d try to pay close attention yourself, and if not all the symptoms are gone after that, you’d do the Pepti part?

  5. Hartje #6

    Only with Li would it not work then? Try to get well informed, otherwise call LLL

  6. Lies #7

    Are they still provoking blindness in the hospital?

  7. Anne #8

    I ate dairy- and soy-free for my daughter, and it helped so much. The rash, tummy troubles, poor sleep, and restlessness all improved. It was doable; I got a lot of support from a Facebook group called "Breastfeeding a baby with food intolerances (something like that)" and another one about cow's milk allergy. I understood that lactose intolerance is rare, and that babies with it usually get sick right after starting formula, and very sickly.

  8. Anne #9

    Breast milk always contains lactose, in which case I think you'll be prescribed Neocate. But it seems rare, luckily. Pepti contains more broken-down milk protein but not much more broken down or equal to breast milk. So it doesn't always help unfortunately, my daughter now gets Nutramigen Puramino, works super. The order is basically, Nutrilon, Pepti, Nutramigen LGG, Nutramigen Puramino and then Neocate. It's worth doing your research before agreeing to something and stopping breastfeeding... You also have Novalac Novarice, but opinions on that are divided.. but if it's not lactose intolerance, I would continue (if you can manage it) with breastfeeding. You'll get the hang of eating cow's milk and soy-free and can find super many tips on those groups regarding food. Many things are replaceable and/or vegan nowadays

  9. Anne #10

    Regarding testing, blood tests aren't always reliable. A double-blind provocation test isn't possible yet since he's still taking in everything? What are they going to do? Scratch test? Lactose intolerance, no idea, but cow's milk or soy tests come back negative regularly while there could still be an allergy. But I saw your baby is almost two months old, don't know what symptoms he has? Hope you'll get good guidance if you go on a diet. Looking up information yourself can be helpful, understanding how things work and are connected. I found it nice to go in with some knowledge since pediatricians don't know everything and aren't always specialized in this.

  10. Lies #11

    With the double-blind provocation, my daughter also reacted to cow's milk by getting a rash and immediately sleeping very restlessly. I'm also curious what they're going to do.

  11. Ezkimo started this #12

    They’re not going to do a provocation test, but a blood test and a skin test. I’ve already been dairy-free for two weeks, but I haven’t stopped soy yet.
    KA said that if it’s KMA, I should stop formula immediately. So I’m looking for experiences where formula was successfully continued after removing dairy products.
    For the lactose test, he’ll get a breath test. He has to stay fasting from 4am, then drink a lactose drink at 10am, and then not eat for another 4 to 5 hours. I find that quite intensive for such a young 6-week-old.
    He cries after every feed. His tummy rumbles really loudly. He kicks his legs and clenches his fists. He has no rash or eczema, and no breathing problems. Stool is normal, and the number of wet diapers is normal. He’s also gaining weight well on breast milk.
    I’ve also contacted LLL, and they’re sending me some documents.

  12. Anne #13

    Ah oké, that sounds familiar. Our daughter also used to cry a lot between feeds, was overstimulated and tense. That got better after a cow's milk-free diet, and later soy was added because she seemed to react to that too. I've read stories from people with many more allergies (think nuts, fish, nightshades, etc.) and they still just breastfed. It's sometimes a bit of a search to find out what he's reacting to, elimination and provocation. Soy is a cross-allergy with milk, and egg is also a common one. I'm curious about the tests! Hopefully, they find out what's wrong, but if he tests negative for cow's milk or soy allergy, that doesn't necessarily mean he doesn't have it. Lots of strength with your little one.

  13. Ezkimo started this #14

    Very severe hidden reflux (lowest value was 1!) but the cause is still unknown for now. Allergy tests were negative but will be repeated after a few weeks. The skin tests didn't react as they should because he's still too young. The blood tests were also negative but indicated that these tests don't give 100% certainty either.

    We're now starting omeprazole, twice a day to give the esophagus rest and let it heal. They recommended getting an IBCLC lactation consultant on board if I really want to continue breastfeeding. That way we can look into what's causing the reflux.

    I've already been dairy-free for quite a long time (the diet was discussed there. I always wrote down what I ate and have had no dairy products for 14 days). However, they suspect this isn't the only cause because otherwise, the reflux should have improved much more by now. Now we're also eliminating all soy products and derivatives, then trying eggs. Then reintroducing them one by one to see if symptoms worsen.

    Formula or pumping was easier and recommended by them because you could thicken it and keep it in the stomach. I've decided to just continue direct breastfeeding and adjust my diet instead of using tricks and not addressing the cause.

  14. Anne #15

    It's great that they're really getting into it. Hopefully, the medication and a more comprehensive diet will help. My daughter used to spit up a lot (just reflux), which meant she wasn't growing well. So nutrition was added around feeding, later in the bottle. But if it's not necessary, I wouldn't start with it. Wishing you all the best!

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