CMPA & Weaning

[JumpJumpSlide]

I've had a few mixed messages from people I know IRL about what milk I could use as substitute to cows milk/cheese/butters/yougurt in homemade foods (ie. Lasagne, soups etc).
LO has just turned 7months and we have been weaning successfully for a bit now. He is still on his lactose free formula which we have been mixing in cereals and homemade veg pots to get more calories into him (he is a nightmare drinking formula and its been an ongoing battle since birth).
HV said now we have established weaning and he is doing well to try cooking with cows milk so he can eat what we eat. Well that was a disaster and have had to deal with a very poorly baby for the past few days.
A lot of people I've spoke to have said to use goats milk/cheese etc and sware by it. I've read it's not the best for babies of this age but am not sure if that means the formula or just goats milk products in general?
I don't know if anybody has been in a similar situation and if so what do you give your LOs that were lactose free? He would love yougurts I think and I'm trying to think of foods that will help him gain weight as it is just a horrendous struggle.

Any help would be appreciated.

Lactose free will not help with CMPA as lactose is the sugar in milk and the issue is with the protein in the milk

If its CMPA then I wouldn't use any animal derived milks

How come he's on Lactose free milk if he's got CMPA @JumpJumpSlide?

What formula is he on?
Is it lactose free or cows milk protein free?

@dementedpixie @DominicRaabsTravelAgent
He's on Sma lactose free.
Firstly they thought lactose intolerance but then a different Dr diagnosed CMPA as he ended up with more symptoms that he wouldn't have had with just being lactose intolerant.
They didn't really give any advice on formulas but just said he was maintaining his weight (although on the low end of the charts), and keep going as I am and see.
I have been back and forth to the drs and they just keep telling me to do what I'm doing (our last visit was last thursday). I've tried explaining it's so bad sometimes that he vomits and I'm often having to hold him at night upright and barely sleeping.
He will literally only drink 4oz max and pushes away but he is hungry.
I've been told:
He's just being greedy so he's vomiting (after 4oz...)
He's not crying now so must be happy.
He's rash is gone so it must be working.

Can I ask what formula you would recommend?
I'm desperate for him to just be ok, I hate for him to be in pain.
Now that I'm writing it out here it clear Hes obviously still struggling and I've been given shit advice by the Drs.

They would normally need to prescribe a formula that's dairy free if they've diagnosed CMPA. It's expensive if you were buying it yourself

What are his nappies like?

DS had CMPA when little but was able to tolerate soya, so could have soya yoghurts and cheese.

We used his special formula to make his meals.

Do you get his formula on prescription? have you been referred to consultant/dietician?

@dementedpixie

Ok thank you for your help, I will get him back into the drs.

@ineedaholidaynow

He has always suffered with his poops, frothy, diarreha etc, and has a few wet nappies a day.
They referred him to a consultant when I first took him he was sent away with gaviscon for reflux... I've been back and forth since he was 6 weeks old he's been on all sorts of meds.

They've said they won't give me formula on prescription.

Can you ask for a referral?

@ineedaholidaynow

I've asked a few time and been told yes but we're still waiting. I'm just going to ring tomorrow I think and insist now.
I thought we might see a difference when he was weaned but I'm thinking the formula isn't working for him.

Thank you for your replies.

According to the NICE Guidelines your GP should have, as a minimum, given you an urgent referral to a Paediatric Dietitian abs prescribed a milk suitable for babies with CMPA. Really, they should have made a referral to the Allergy Clinic as well.

Do go back to the GP today abs if they refuse these referrals and prescribing if the milk, ask them why they aren't following the guidelines on suspected non-ige CMPA in babies.

Allergy UK have some information on CMPA and a Helpline too, which might be helpful.

@JumpJumpSlide did you manage to get anywhere with the GP today?

Thank you all for your replies and help I really appreciate it.

@ineedaholidaynow
I phoned and was told they only had emergency appointments left and he wasn't classed as an emergency as he's having wet nappies.
Been told to phone tomorrow.
Phoned hv and she's been absolutely great and has put in a request for us to be referred ASAP.
Will try again tomorrow morning, not going to stop ringing until he's seen properly now.

Thank you again all.

Good news about the HV. Hope you manage to get a referral as soon as possible

We were seen by a paediatric dietician who could advise properly. See if you may be able to get a referral - it was so much easier with guidance

My DD was prescribed SMA Alfamino for CMPA, it’s an amino acid formula rather than just hydrolysed like some hypoallergenic formula.

Just popping on to say, we had similar problems with our GP and it was the health visitor who went into bat for DS with everything, GPS are reluctant to spend their money I think. We tried Althera milk first but moved onto alfamino on prescription, I'd recommend adding a little nesquik powder to each feed though as it's gapping!

My dd had cmpa - grew out of it 3. She had nutramigen prescribed but once weaning she'd have almond milk mixed in stuff. When it's time you'll be told to do 'the milk ladder'. Step 1 is something like a biscuit made with milk powder, definitely don't do any cooking with any cows milk or cheese. Keep going back to the gp until you get some proper help and a referral. Good luck.

DS had nutramigen too (wasn't very keen on the taste), he grew out of CMPA at about 2

So glad that your HV has referred you. Agree with the PP who has said that the GP may be reluctant to prescribe a suitable formula due to the price. Stay firm to get your LO what he needs

Hi how did your little one get on with the sma formulas is she fine now