Cows milk protein intolerance?

[chelle85]

My LO has suffered with bad wind and stomach pain since birth. He is now 18 weeks old and bar a couple of bottles of formula in that time he is exclusively breastfed.

The doctor has medicated him for reflux but it hasn't made much difference and they are now pushing the idea of cmpi.

I did an exclusion diet for 4 weeks and it seems to have made no difference at all but they want me to carry on with it. I feel trapped as I cannot get my LO to take the hydrolysed formula.

However he doesn't have any other symptoms of an intolerance. Even when he has had the regular formula his symptoms have not seemed any worse. His nappies are normal (no green/mucus/blood) and he has no skin issues

Anyone else have experience of a LO with CMPI that had no symptoms other than abdominal discomfort?

At my wits end as to where to go from here as he has been waking every 45 minutes at night for the last 8 weeks and I am utterly exhausted

I bet you are exhausted

When yiu say you’ve been on an elimination diet, have yiu cut it out completely?

Having skin issues is more common with ige CMPA and it sounds like they may suspect non-ige CMPA.

Has the reflux medication made any difference? Have they altered the dose as he’s grown?

I've cut out anything that has milk listed as an allergen (bye bye chocolate 😪and pesto - my two favourite food groups!)

I have been messed about from the start with medication. Given Gaviscon by GP1 to begin with but that just constipated him and was a nightmare to give when Bf.

Then GP2 gave me ranitidine 5mg/5ml and told me to give 5ml 3x per day. No way was I getting 5ml into a 5 week old baby....

At 7 weeks GP3 gave me 75mg/5ml strength ranitidine and told me to give 0.3ml 3x per day.

No change so off to paedeatrician who advise to up it to 0.6ml and if no change to 1ml which was max dose for then weight (end of November)

Seemed to get worse and mentioned to GP2 who says it can cause abdominal pain as a side effect so reduce the dose back down...

Contacted paed who instead said to put it up to 1.2ml due to weight increase. GP4 meanwhile adamant that he thinks it is an allergy. No difference after a week on 1.2ml so prescribed Omeprazole alongside at 4ml (which he spits straight back out and screams blue murder at!)

To make matters worse I was hit with a vomiting bug a couple of days ago and my milk supply has taken a massive hit but I can't top him up on regular formula and he won't take hypo allergenic and I can't express what I used to and only have pre dairy free expressed milk frozen

Add to that the lack of sleep and I'm so stressed I may spontaneously combust!

Sorry just realised quite how long that last post is!

I basically want dairy allergy ruling out so I can at least not stress about feeding him!

Chelle I doubt your supply will have been affected much. If he’s fussy, he’s probably just having a growth spurt. I’d put your feet up and feed as much as possible for the next couple of days

As for the food you are missing, Sacla do a DF Pesto and have you tried a good dark chocolate. Some have milk in but lots don’t.

I'm currently in the minefield that is possible CMPI in my 19 week old. I've been dairy free for 9 weeks now and to be honest I don't see any difference in him.

The GP has put the idea of CMPI into my head based on nothing but silent reflux and some eczema on his face and I feel like it's totally taken over my life.

Many babies with CMPA will also have a non IgE allergy to soya - I think the figure is something like 60% or more also react (because the proteins are v similar). So if you're excluding any dairy, you should also exclude soya. If you find a positive effect, you can then always try reintroducing soya. I really would advise excluding both at the same time, or you may be ruling out CMPA when actually it's more than one allergen at play.

I know it's a pain, but I went through all this 10 years ago, with a DC with all the classic symptoms, and it took 5 months for them to sanction dietary intervention...so I think it's good that medics are seeing this as a first port of call now.

Reflux meds can cause wind and abdo discomfort. Is he still on these? And do they help at all? I would be inclined to see how he goes without the reflux meds if they don't help. I would also agree with others and say lots of people need to cut soya out as well. It's a big ask though and you do need to be careful that your diet remains complete when you are cutting all these foods out. You should be taking vitamin D and calcium supplements

The lack of deep sleep was one of my DD symptoms of CMPA. She never got into a deep sleep and she was extremely restless when she did sleep. Hands and legs going all the time as well as constantly being bunged up and snorting when she was crying.
Depending on which formula you've been prescribed it maybe that your baby is still reacting to it if it's a hydrodginised one rather than an amino acid based one. I think as he's reacted to breast milk you should have been given an amino acid based one. Also when I was BF I was told it takes 3 weeks to leave you and a further 3 to leave baby.
In regards to reflux meds I actually found out by accident they were making my LO worse. I believe it's a sorbitol allergy as she's the same if she has paracetamol as that contains it too. So maybe worth trying a break from meds for a couple of days just to see if it makes any difference.
The only other thing I can suggest To make the milk taste better is that you can put vanilla essence in the formula and slowly reduce the amount if he takes it.
Good luck

Sorry to hijack but I have a question. My DD is 13 weeks old (EBF) and has been really windy since birth really. Very very farty with foul smelling farts and arches her back often, and can be quite moany. She also spits up milk quite often. My DD1 didn't do any of this

She does however sleep well at night generally and is happy laying on her back/I her play gym etc.

Does it sound like CMPA? I mentioned it to the GP at her 6 week check but she didn't seem concerned as long as she's gaining weight and sleeping well but I'd hate to think she is in discomfort because of what I'm eating. I might give it a go for 3 weeks but will take almond or coconut milk instead of soya.

Should I go back to GP?

Cheeky have you read this from Allergy UK?