Baby CMPA - please help

[LPC20]

Looking for some advice / similar stories/reassurance.
My little boy is 14 weeks old and has had loose stools since he was born going up to 8 times a day. I EBF until November and I introduced 1 bottle of formula. The day after I found blood in his poo. Doctor prescribed aptimil pepti and I cut out all milk and soya (my husband has an epi pen for his allergies to milk and eggs so I have followed a very strict non-diary diet). The blood has continued since November and the doctors kept telling me to ‘wait six weeks.’ I waited the 6 weeks and the blood and loose stools were still happening. He began to develop reflux so I had him weighed and he had lost weight. Doctors finally took me seriously, stool sample was abnormal with high inflammation markers and now referred to dietitian, paediatrics and allergy clinic (awaiting the last two). The dietitian said she isn’t entirely convinced it is allergies and thinks it could be crohns, celiac, ulcerative colitis but my doctor said he’s too young for any of that and could only be his diet?? He’s been on SMA Alfamino for the last two weeks and I’ve cut out egg too and his poo was getting thicker and was only going twice a day but today he had very frothy explosive poo with stringy blood throughout again and I’m just at my wits end worrying all the time. Other than the above he is a smiley, happy, content baby. Is there anyone out there who has gone through something similar? Any advice? I did suggest to the dietitian stopping breast feeding and see if that would help but she said not to stop. Thank you

It takes awhile for the gut to heal if it’s really inflamed
Is the formula he’s on a total broken down one with no soya in?

Agree with the PP that the gut can take a while to heal. If I've had something I react too just once it takes two weeks for me to feel ok again. Imagine having that reaction multiple times a day for months on end.

Do you keep a food diary to see if you can spot a pattern?

And it's not up to anyone else when you stop BFing. You stop when either you or baby wants to

Hi OP. Nappies are the last thing to clear up. I think it can take something like close to 12 weeks before you'll see an improvement. Other symptoms (reflux, gas, discomfort, skin issues etc) can stop much quicker. There is a Facebook group called breastfeeding with CMPA and other allergies. I found it incredibly helpful. Some of the women have experienced CMPA and reflux with multiple babies and are also dealing with really severe allergies so there's a lot of helpful information on there, as well as support if you need it because living with CMPA can be tough.

I was fortunate in that one of my GPs took it seriously (another was dismissive and said it was "normal") and we got a referral to a pediatrician pretty quickly. She offered to prescribe neocate straight away (I've seen others having to fight for it for weeks/months because it's typically offered for severe allergies after having tried various extensively hydrolysed milks) so we were very fortunate. I didn't accept it because I preferred to breastfeed and we were seeing improvement from my diet. Breastmilk has healing properties so it will actually help your baby recover from dairy. Dairy free formula is also meant to taste awful and is quite thin so it can be difficult to get baby to take it. If you're happy to continue breastfeeding then you might actually find it easier.

We were also referred to a dietician but the appt never came through until months after starting weaning and they only sent allergy info you can get online.

My health visitor was also fantastic at providing information and directing me to different services, websites etc. so maybe worth speaking with yours.

My son used to flare up after I'd had a minor slip up (I once mindlessly took a bite of a mozzarella stick and he cried for hours, same with a milky coffee I didn't check). He's now 21 months and after a fail at first attempt (12 months), he's sailed through the milk ladder with only milk left to test. It definitely gets easier and in most cases, babies grow out of CMPA somewhere between 12 and 24 months. It's really difficult in the beginning but definitely gets easier.