Colief/ Nutramigen for lactose intolerance?

[RubySlippers77]

My poor DS1 is (I think) lactose intolerant - he's 12 wo and has lots of the symptoms described on here - spots, grunting, tummy cramps etc. His twin brother is absolutely fine (touch wood!) but his father is lactose intolerant, hence why I suspect it could be that.

They've always been bottle fed and he has gained weight on Aptamil, but again not as much as his brother. Over Christmas it got so bad that he was refusing milk as he knew it would hurt his tummy :-( took him to the emergency GP who prescribed lactulose as he hadn't done a poo for a couple of days. The lactulose did get things moving but a bit too much, which frightens him - I'm only giving him one dose a day instead of two now.

We then went to the GP on Tuesday who prescribed Colief, it has improved things but not to a great extent. She's referred us to a paediatric dietician but couldn't give me any idea how long it would take for an appointment - she told me she couldn't prescribe any specialist milks such as Nutramigen, it would have to be done via the hospital.

Is there any point me buying some Nutramigen privately and seeing if it will help, or does Colief do the same job anyway? He has a slight tongue tie so I'm reluctant to try Aptamil Comfort, as apparently it's very thick and I think he would really struggle with it. Does anyone know what consistency Nutramigen has?

Any help much appreciated - I cried this morning looking at his sweet little face and feeling so helpless :-(

[dementedpixie]

It might be more likely to be cows milk protein intolerance rather than lactose intolerance (lactose is the sugar in all milks). From googling nutramigen is for cows milk protein intolerant babies. Sounds like there is a bit of confusion as to what the issue is

[RubySlippers77]

I guess it is cows milk protein intolerance then? My OH was told he is lactose intolerant but is ok with goats butter, sheeps cheese etc?

[Flingingmelon]

You can buy nutramigen for about fifteen quid on Amazon. I'd be careful about trying it though. Not because it's dangerous but different places seem to have different guidelines for prescribing and you don't want to put anyone's nose out of joint.

We used it very successfully for DS's first year. It was prescribed by a GP in London but he'd only give me a tin at a time which was very stressful as DS refused everything else.

We moved (Bedfordshire) and the new GP put it on repeat prescription for us providing we were referred to a dietician at the Hospital. She was no more use than the fantastic Nutramigen Facebook page but it kept the formula coming. In fact eighteen months on I still have a box of ten cans I need to take back to a chemist.

We never quite worked out whether DS was lactose or dairy intolerant, but he grew out of it at two.

Good luck OP

[Flingingmelon]

Oh, but if you do choose to buy it privately...DS got much better in about forty eight hours, he was having about 60% nutramigen and 40% expressed dairy free breast milk.

[Flingingmelon]

Just reread your post (sorry!). It's the same thickness as cows milk.

[dementedpixie]

Lactose is in all milks including goats/sheep, etc so it is unlikely he is lactose intolerant.

[Kim82]

If you're thinking it's lactose intolerance you can buy lactose free formula, SMA LF is available in boots, sainsburys, asda, etc. maybe try that first to see if it makes a difference.

From what you say in your OP it sounds more like cows milk protein intolerance that your Ds is suffering with which will need Nutramigen or something similar (Neocate, Aptamil Pepti and I think SMA do one too).

GPs can prescribe the milk, I know a few people who managed to get it from there without a referral to the hospital - we didn't though, we got ours prescribed at A&E initially as our dd was refusing to feed and the GP was next to useless!

[RubySlippers77]

Thanks everyone - we're actually back at the GPs tomorrow for injections, I'll try to make another appointment as even the Colief doesn't seem to be working much any more (he did improve initially on it). He's back to tummy cramps, hiccups etc now, poor little man.

Our health visitor advised not to change milk brands unless it was really necessary - but this was before the tummy problems - I'm guessing Aptamil Pepti would be best to try first, as they usually have Aptamil.

It's encouraging to know that Nutramigen isn't too thick - I'll have a look at their Facebook page too!

[RubySlippers77]

Also sorry if I sound dim, but presumably the specialist milks are for more extreme intolerances than Colief can cope with? I'm not sure of the difference!

[dementedpixie]

Colief breaks down lactose so will only help if there is an issue with lactose. The other milk have the cows milk protein broken down so it is less likely to cause a reaction or is free of cows milk protein completely

[dementedpixie]

Lactose = sugar in milk whereas protein is the protein bit e.g. whey, casein

[dementedpixie]

www.isitcowsmilkallergy.co.uk/getting-my-baby-diagnosed/cma-or-lactose-intolerance/

[ABetaDad1]

Ruby - have you had DS tested for coeliac?

Lactose intolerance often goes with coeliac.

I am severely gluten and lactose intolerant although I am not a classic coeliac.

To be honest don't bother with Colief. I used for a while but now I do the following to make life easier:

Replace milk and yoghurt with Lactofree milk and yoghurt. This is a brand you can easily buy in most supermarkets. I buy mine in Sainsbury. It is normal milk and yoghurt with the lactose removed by Lactase enzyme (which is all Colief is).

I also only use Pure margarine. This is a brand of margarine which has no milk solids in. I use the sunflower version of Pure margarine and again buy from Sainsbury

I only eat hard cheese like Cheddar and Parmesan in moderation. Avoid creamy cheeses.

I can tolerate some cream in moderation as well but ice cream makes me feel unwell. Yu can buy Swedish Glace non dairy ce cream but I don't think it tastes that nice.

Finally I do urge you to get DS tested for coeliac. He can use lactofree products while you are waiting for coeliac tests but he MUST carry on eating bread and other flour containing products for the test to work.

[dementedpixie]

He's only 12 weeks old so too young to be tested I would think

[ABetaDad1]

APOLOGIES. I SEE HE IS 12 WEEKS OLD. NOT 12 YEARS OLD.

IGNORE MY PREVIOUS POST. HE WILL NOT BE ON COWS MILK YET.

[Flingingmelon]

Worth book marking the thread though. I could have done with Abetadad's post when I started weaning!

[RubySlippers77]

Whilst at the GP today I asked after our referral... They haven't even done the letter!!

Very frustrated, poor DS1 is desperately trying to have more milk, but it just makes him poorly. The Colief helps a little bit but not significantly.

I asked the pharmacist what they could recommend but it wasn't much, they prefer not to sell the specialist milk without a prescription.
I am so frustrated - the GP is supposed to be calling me tomorrow but I don't see how else she can help anyway !

Any suggestions? The pharmacist said if it gets worse just sit in A&E till they see us, that way they HAVE to do something...

[ButtfaceMiscreant]

My DTS1 is suspected to have CMPI, so I have gone dairy free as breastfeeding him. We were given ranitidine as well for him as CMPI cant really be diagnosed, only suspected in young babies. Has your DS had a blood test? Mine did when we sent straight to A&E from the GP (with queried pyloric stenosis) so he had bloods done there with the result being suspected CMPI. Also waiting for a dietician appt but not heard anything yet.

It might be worth going to A&E if he is refusing feeds, but obviously if he is feeding ok and projectile vomiting wait and see what the GP can do for you tomorrow and go from there.

[Kim82]

If he's refusing feeds then go to a&e, small babies can go downhill very quickly. We went to A&E and they were brilliant and said it was the right thing to do.

[RubySlippers77]

He had milk without Colief this evening (we ran out and the GP hadn't done a repeat prescription) and now he is thrashing around and sobbing. I just can't do this for another night :-(

Rang 111 but they can only get me an appointment with an out of hours GP - but there's not much point as they can't prescribe the specialist milk either - or ask my GP to call urgently, but they're supposed to be calling tomorrow anyway.

I'll see how he gets on overnight but I think I may go to A&E tomorrow, have babysitters lined up already for his twin brother. Usually he sleeps very lightly, wails, wakes up for a feed and then eventually gets exhausted thrashing around and falls asleep again; the Colief did improve that but not significantly.

Thanks everyone, if I knew we'd see a paediatrician in the next week or so then I'd probably wait and carry on with Colief in the meantime, but if they haven't even sent the referral letter...!

[Kim82]

Could you not get there with him tonight? As awful as it sounds he may have calmed by the morning so A&E might not do much whereas if you take him now they will see him at his worst - screaming and unable to sleep - so they will be able to help if they see for themselves how he is affected.

[dementedpixie]

You can buy colief over the counter too

[Flingingmelon]

Really feel for you OP. I wondered if you could get a private doctor to prescribe but it looks like a no.

I did find this online; it's the NHS advice to GPs. Useful to know what their thinking is;

http://www.cumbria.nhs.uk/ProfessionalZone/MedicinesManagement/Guidelines/Infant-formula-milk-prescribing-guidelines.pdf

[purplewhale]

Can't say much that hasn't already been said but overnight chemists will sell you colief. It's £12 for a tiny bottle
DS has been on nutramigen since 8w and he was a different baby within a couple of days on it. It's no different to aptamil and we use a perfect prep. It has a sligh tendency to clog the teat but we've got around this by putting the powder in before the hot shot

Incidentally I wen to the GP as I couldn't cope with my screaming baby expecting him to give me ADs. Instead he prescribed DS with nutramigen. We get 12 tins at a time on repeat.

[RubySlippers77]

Thank you so much everyone - it was interesting to see the guidelines - from the chart it looks like he has CMPI rather than lactose intolerance, or that would be my best guess. He's finally asleep now but Kim, that's a very good point, I might end up taking him back during the night if he has a bad reaction to his night time milk. It's not like I'll be able to sleep anyway!