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CMPA - 3 week old(4 Posts)
I am new to this part of Mumsnet so I hope i'm in the right place!
We have had issues with our DS, firstly he was EBF however a small mouth made the latch too painful and so after mixed feeding for the first 10 days we were advised to stop Breastfeeding (baby getting too frustrated with latch and refusing to feed due to stomach discomfort)... we were also told to use Colief to make his formula milk lactose free. 2 days later and the HV advised us to change to a lactose free milk as its a more sustainable solution etc...
Anyway it turns out DS more than likely actually has CMPA like DH had as a baby. We have ordered a few tubs of Pepti 1 to try him on but its very expensive so we would need a prescription ideally. We took him to GP today on the health visitors advise and although they agreed it would seem he has the allergy and they want to prescribe him Neocate formula? But they have said he is too young and will need to see another GP next week who is a paeds specialist. In the meantime they tried to advise me to start breastfeeding again with a dairy free diet (not sure how when my milk has all but gone) and have given us hydrocortisone for his facial rash and gaviscon for his milk (he does not have reflux so quite confused about this!)
Basically i'm just looking for support and advice of what to do with him until the doctors appointment next week. I can use the Pepti 1 in the hope that its a miracle cure and i guess just try to convince the doctor to prescribe it (if it works and they won't prescribe is there anything i can do?). I am reluctant just to carry on as normal without at least trying the pepti 1 as poor DS is so uncomfortable 90% of the time and his face is now really swollen and covered in a sore looking rash.
My youngest has CMPA, he didn't have any symptoms apart from bad nappies with the white bits of undigested protein in them. He's breastfed so I have no experience with formula, but I was prescribed neocate when the doctor diagnosed him (he was 5 months old). If you would like to continue breastfeeding it should be possible to get your supply back, lots of skin to skin, express when you can and latch him on often. I cut out dairy and soya because he reacted to both, but it's surprising how much there actually is to eat still. I don't miss dairy now. Apart from cheese!
There is a FB group you can join where they will have loads of advice about getting your supply up if you are wanting to carry on (search CMPA advice breastfeeding, it should come up). I'm afraid I have no advice about formula though, we never could get our guy to take a bottle!!
Neocate is fantastic and hard to get prescribed as it’s around £50 for 400g tubs, it has no milk protein at all in it whereas pepti still contains small particles
My son has cmpa and he is on neocate, it's brilliant if they're willing to give you that milk first! Many doctors try other forms of milk before settling for a completely DF one.
The HV was talking nonsense, it's very rare a baby is born lactose intolerant and if they are it's usually due to both parents being LI.
Many babies who have cmpa also struggle with acid reflux so I suppose the GP just wanted to make sure you had everything you might need until the appt.
I'm not sure where I've heard this from but I do think it's possible to start bf again after a short break if you continue to latch the baby, might be wrong!
Unfortunately if you wish to carry on bf then the dairy in your system can take upto 3 weeks to clear before your milk is DF. This is the reason why I decided to use a DF formula instead of ebf as in total in can take 6 weeks before it leaves yours and the babies system.
I know it seems like a lifetime away but it will get better!
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