Goats milk formula - completely different baby

[theadoory]

Hi! I just want to put this out there in case it helps anyone.
Our baby had the most extreme gastro issues imaginable from the start - screaming in pain for hours on end, utterly miserable and not meeting milestones. No smiling, cooing, eye contact, at 9 weeks old.
Utterly miserable all the time, extreme twitching movements, really gassy and smelly, very depressed looking.
We were really worried about something developmental going on, but the distress he was in after bottles was so brutal that I suspected some sort of issue with the formula, or my breastmilk as I was combi-feeding.
Was fobbed off by the health visitors who said ‘its normal, just while their digestive systems get used to’ blah blah. Our first son was a bit colicky etc - I just knew this was something completely different.
We were seen by paediatric a&e at addenbrookes and referred for full work up - bloods, brain scan, audiology and eyes, as they were super worried about his lack of turning to sound and responding to anything at all.
Anyway, while all this was going on, we decided to change his formula from cow and gate to kendamil. This made no difference.
We decided one last try - kendamil goats milk formula.
In two days, he was a different baby. It was like he ‘woke up’ in a way.
No more gas pain, colicky screaming, staring off into the distance not responding. He smiled, then laughed, then made loads of eye contact, and is now the happiest, smiliest, most engaged and chill baby ever. He’s now three months old.

Whenever we’ve tried cows milk again (for example using a ready made cows milk when out and about) all the symptoms came back.

All the hospital tests came back negative.
It wasn’t cows milk protein allergy as he didn’t have rash/breathlessness etc. It can’t be lactose intolerance, as goats milk still has lactose.
The paediatrician was pretty amazed, as goats milk is very similar to cows - but its worked, and we’re going with it.
Only downside is that Kendamil don’t do ready-mades in goat, which is a right faff - but its worth it if he’s now comfortable enough to develop properly. He was just in so much pain, there was no energy left for behavioural development.
Oh, other downside is the OBSCENE cost. But obviously its worth it. 🙂
Video is how he was almost constantly before the switch, photo is a few days after and how he’s been since.
By the way, if anyone has found a goats milk formula in ready-made form, please let me know! 😅

It still could be cmpa by the way. The symptoms you described are for immediate allergies there are also delayed allergies my daughters symptoms of delayed allergies were the same down to the development delays. She was very behind at 17 weeks but after a week of me being dairy and soya free she was responding to sounds and smiling. Delayed allergies don't show up on tests and can only be identified by removing dairy, then testing dairy again to see if symptoms remove.
About 90% of babies with cmpa will react to all mammalian milk so it looks like your little boy is in the lucky 10% I'd say your test removal of dairy and reintroduction confirms a delayed CMP allergy some times also referred to as nonige allergies and used to be called cmpi which is what my daughters paediatrician still uses.

Thanks so much for this. I thought this too initially but the doctors didn’t diagnose him with anything.

If they don't need to do anything they probably won't diagnose and will leave you to your own devices to be honest. If they didn't settle on the goat milk formula and they had to prescribe you a hypoallergenic formula they may have diagnosed delayed cmpa /cmpi. The diagnosis is only really useful in order to get formula and once they get to school and needing alternative school meals. My daughter was diagnosed as a baby but the first time we were asked for Dr letters to prove my daughters allergy was when she started school. The letter meant they had to provide her with safe meals without it we would probably have ended up doing packed lunches as she wouldn't have been able to eat any of the meals.
I'd probably ask for a dietitian referral, your HV can do this usually, for some advice on what to do at weaning and whether you would need to test dairy directly or whether your test with the formula is enough to recommend dairy free weaning and trialling the milk ladder once they are 1.