Try SMA lactose free without medical advice?

[lucylookout]

Hi, I have an 11 week old ds2. He has been EBF. At about 5 weeks he started showing reflux symptoms, so I cut out dairy from my diet. About 8 days later his reflux symptoms disappeared, so that was great. I take a good breastfeeding vitamin with I think 80% rda calcium and 100% vit d, and have rice milk fortified with vit d and calcium in cereal and tea. I would like ds to be able to be able to have a bottle once in a while, mainly so I can spend some one on one time with ds1 who needs a bit of my attention I think. I have tried to express but it takes me three goes to get 5oz, I just don't seem to have the time (or enough excess milk) to do this. I tried aptamil comfort formula once, and the next day ds2's reflux symptoms came back. So, what I'd like to know is whether you think it would be ok to try ds2 on a bottle of sma lactose free tomorrow morning, and go to the baby clinic on tues afternoon to update the dr with what I'm doing and check I and ds are getting enough calcium.
I'm figuring that:
a) he's almost completely breast fed apart from the odd bottle here and there
b) as you can buy it over the counter it must be safe.

What do you think?

My opinion (as a mum of 3, the 3rd of whom has dairy and soy allergies and reflux and all of whom have been bf):

it's unlikely (not impossible) that it's the lactose in milk that your baby reacts to. My dc3 had lactose intolerance but it was a temporary condition caused by gut damage which healed over time. Lactose intolerance is VERY unusual in babies and children under 5.

If you really want to ff you would be better trying soy-based formula (but be aware that some babies with a dairy allergy also have a soy allergy). No idea what milk that might be (never done ff) but maybe someone else can advise.

Breast milk has lactose in it.

PS 5oz in 3 sittings isn't bad, I average 1oz per sitting .

PPS My son (9 months btw) is only breastfed but even the tiniest amount of dairy I ingest will cause a return in his symptoms (I'm talking a single square of chocolate here!) He would react horribly to even a single bottle of cows' based milk regardless of the fact that he is mostly breastfed! Sorry

Is the lactose free milk, free from cow's milk protein as I think that is what most children who react to dairy are really reacting to. My Ds2 was cow's milk protein intolerant and so we were given SMA Soya Formula - which he wouldn't ever drink as it is vile!

I would wait and speak to a dr before you try anything as if they think he needs a special milk they will prescribe it for you as otherwise it is very expensive.

I should add I bf ds2 till 11 months and in that whole time for me to express enough for a bottle (which he wouldn't bloody drink from!) it would take about 6 sessions of expressing so you actually sound like you are doing pretty good, although I know expressing is a PITA.

Do you leak much when you feed? If you do you can collect that in breast shells rather than having to express on a seperate occassion. With ds1 I used to leak 3 ozs each feed! That's why I couldn't believe how little I could express with ds2.

I would keep doing the expressing, personally.

the more you do it the more you'll get.
5 oz in 3 goes is okay.

you can freeze it, and keep topping up what you've frozen.
with DD, i find that i get more out if i've just fed her on one side and express the other.

ooh, yes, tutu, good idea

Hhhmm, really, so he's already getting lactose in my breast milk even though I'm dairy free.

I'm so confused, I just don't know what's wrong with him.

I keep a kind of fussiness/sleep diary for him and I just realised on Wednesday I gave him a dream feed bottle that had about 2.5 oz breast milk and about 4 oz formula (aptamil comfort). Ironically, it was one of the few good nights we've had (woke up at 2 and 5 and went down easily after feeds). If he did have an allergy to cow's milk protein, would he have had trouble digesting that bottle straight away (he was also fine all of Thursday until I think a bit of a fussy period late afternoon on Thursday)? He also had a bit of a fussy period this afternoon (and he's had only breast milk since Thursday night when I tried the bottle of formula mentioned above) when he threw up a bit, but I think he was just mainly getting 'end of day tired'

Maybe he's not allergic to cow's milk protein (and doesn't have lactose intolerance). Maybe I'm off dairy for nothing!?

Sorry, I'm a bit all over the place, I've just completely confused myself. If only he could talk and tell me what's wrong!

What else is happening apart from the reflux?

From about 2am (or 5am on a good night) he seems really in uncomfy with trapped wind. He strains, grunts and cries, lifting his legs up trying to get farts out. When he does fart he's peaceful until about 2 mins later when he starts working on the next one. He poos daily. They're runny (consistency of single cream, dark mustard colour). He goes to sleep peacefully, swaddled at night. He won't nap more than 20 mins in the cot during the day, HATES the car seat and pram so gets some good naps in the sling (between about 3 and 4 hours a day). Oh, also he gets quite congested over night and before I gave up dairy he had a slight rash over temples.
Not sure what's relevant, what's not!

Just to clarify, we've only had two 'good' nights since he was born. It's from 1.30am/2am most nights that he fusses and might sleep for 40 mins every 2 hours if I'm lucky.

Have I got the right person lucylookout? Did you say on another thread recently that he had had a tongue tie revised?

I really think you need to go back to your GP and ask for a referral to an allergy specialist. It's so hard second guessing at home, whereas a RAST test (a blood test) could tell you what you need to know.

My twins are both allergic to CMP - DTS's RAST score was 29, so classed as mild / moderate, while DTD's score is low at 1.89 but she shows a definite reaction if given cheese or yoghurt. However, both had formula as young babies with no obvious ill effects. DTS was a miserable baby and perhaps he had tummy ache from it, who knows? But his reaction to formula back then, was nothing compared to the swelling, itching, hives, coughing, wheezing etc he got when we gave him cheese at weaning.

Allergies and intolerances are so tricky, so individual, so unpredictable that I think you need to see an expert, not try and guess what the problem is.

Hoope you manage to get to the bottom of it

If he stopped reacting to your BM when you went dairy free then he's reacting to dairy. That's fairly common. I'd use soy formula for the odd bottle feed.

Hmm could it be silent reflux rather than reflux- and if so try will prescribe you infant gavisgon which might help?
Hv told me not to give up dairy as I'd need the minerals etc despite supplement, and also that would be more likely to lea to allergies later
Dr also independently said same

As others have said, he's likely to be reacting to cows milk protein, not lactose. Babies who are sensitive enough to react to the tiny amounts of CMP passed through breastmilk will probably need a specialist amino acid based formula (Neocate or Nutramigen AA) which although available without prescription are prohibitively expensive. You may be ok with soy formula but there are concerns around using soy with young babies and 50% of those who react to CMP also react to soya. Allergy testing may not help you as a lot of babies who react to dairy are not allergic and have no IgE antibody which is what the RAST tests look for. Delayed-reactions/intolerance/type 4 hypersensitivity, which is the more common reaction, does not show up on allergy tests. If you can demonstrate symptoms when you have dairy, improvement off dairy, relapse when you reintroduce it then that is the gold-standard for diagnosing a cows milk protein intolerance of some description and you need to seek medical advice for the best route forward. You probably need to see a paediatrician and a dietician, most GPs completely clueless on this in my experience.
Can't recommend the Little Refluxers support forum enough - all that kept me sane the last 2 years with a MSPI (milk and soya protein intolerant) refluxer.

Thanks for all your advice. I'll definitely talk to my dr before doing anything.
Mawbroon, yes, I thought I recognised your name too! He had tt snipped at 3 days

Breastmilk is high in lactose so if he's been fine with EBM he doesn't have a lactose intolerance.

You really need to see a dietician who can diagnose an intolerance before you start cutting food groups out though. You can get a referral from either your HV or GP.

What might be useful in the meantime is to speak to someone at a BF support group who could give you some tips on expressing and show you how to hand express- lots of women find this a very effective way of getting milk out quite quickly and easily (no messing about with cleaning pumps etc) so are able to find a couple of 10-15 minute sessions per day to have a go and can therefore build up quite a stash.

You can hopefully find out where your local groups are by phoning your HV or children's centre. Alternatively you could ring the NBH on 0300 100 0212 and ask them where your local groups are also about expressing.

I really do wonder if his tongue (and maybe lip) are still restricted causing the problems with the reflux and wind.

Tongue ties can reattach, despite hcps saying they don't! If you cut the body, it tries to heal itself. This could be what has happened or perhaps the revision wasn't done deeply enough before.

did I link to this before? There are pics in this one of lip ties to give you an idea if he has one.

some good information here about latching technique if there is an upper lip tie

Thanks mawbroon, interesting reading. Will check again in morning

An awful lot of refluxers have tongue tie. My DS had one corrected at 3 days. Quick straw poll of reflux sites shows many more TTs than you'd expect. The Analytical Armadillo blog has some interesting theories why this is, or alternate theory is that TT is one of a series of midline defects which include tendency to reflux. All very interesting, but there do seem to be a large population of babies who have TT and reflux but correcting the TT does not solve the problem.