Cows milk protein intolerance diagnosed at 12 months - help!

[chocolatecheesecake]

Apologies in advance for long post but don't want to drip feed. I've had a look online but understandably most sites focus on allergies and more serious intolerances.

My son has just been diagnosed with cows milk protein intolerance. I am confused by my GP's advice and wanted some advice from parents who've been through this already.

DS was breastfed until 9 months, and had aptamil at least once a day from 6 weeks. It has been clear from the outset that he is sensitive - sick a lot, extreme constipation when aptamil was introduced (though he then adjusted), and series of dermatological rashes, exczema etc. Pretty much constant colds (though he is DC2 so germ exposure is his lot). When weaning he had a skin contact reaction to fresh tomatoes but nothing else obvious although rashes/ hives were common. (He also had skin issues on his chin from teething/ drool so this clouded the picture somewhat). His father is asthmatic. He had cows milk on his cereal and milk/ cheese in cooking and no apparent reaction.

When he was 12 months I switched him from aptamil to cows milk. He is on the 99.6th centile for height and weight and very hungry, so that meant 21oz a day of cows milk plus that used on cereal/ in cooking. He immediately got the runs and this lasted for two weeks.

His GP put him on SMA wysoy and overnight his poos went from 4-6 times a day to 1-2 times a day, and after 4 days the consistency of those poos was back to normal. After two day on wysoy I also cut his milk to 14oz in case it was a quantity issue. GP says to keep him on wysoy for a few months then try him again on cows milk, and that it is ok to keep using cows milk on cereal and in cooking. He won't refer to a dietician until DS has been tried again on cows milk in the new year.

I am confused by this advice. If he is intolerant, should we be cutting it out entirely to get a baseline for then establishing what his trigger limit is? Or is it good to challenge his system? Do we need to check for other intolerances given we now know he is sensitive to cows milk as well as tomatoes?

[chocolatecheesecake]

Bump

[SayCoolNowSayWhip]

No real advice I'm afraid, but didn't want to read and run.

Sounds like you've had a rough time.

I'd probably push for a referral to a nutritionist or similar. Is there an infant feeding specialist at your local hospital?

[Bakingtins]

My DS2 was CMPI, diagnosed at 4 m old, but he was v sensitive and reacted to CMP in my diet via breastmilk and minute traces in food. He was also intolerant of soya.
We had to do minimum of 6 months with no exposure at all, then a series of challenges starting at the lowest level (2nd hand via breastmilk) and backing off again if he reacted. He was ok with me having dairy by his 2nd year, and outgrew it completely between 2 and 3 yrs old.
In your shoes I would go completely dairy free for a month or so to establish a baseline, a lot of the problems with eczema, rashes, being snotty and vulnerable to infection, diarrhoea may be connected. If you can use soya products that makes life relatively easy. Then once you think things have settled try an introduction. The guideline is that you start with the most processed dairy e.g. Skim milk powder in a biscuit, and then work up to hard cheese, yoghurt, whole milk, and also that you start with small quantities and increase the amount. If you get any sort of reaction back off a bit and try a month later.
We are still a bit careful about quantities with DS though he can have small amounts of anything, but he still doesn't have milk offered as a drink, for example, but has some on his cereal.

[chocolatecheesecake]

Thanks for posting. What you outlined is what I expected our GP to say - I was completely thrown when he didn't. I will have a think over whether to DIY as per your post or push for a referral first.

[TinyDiamond]

Hiya I've been there too, it is really difficult. First things first you need a dietician referral. They are sometimes not totally helpful but it is important to get into the system. As he is under 2 he will need some sort of formula if he cannot handle animal milks. I would be wary of the soy as I think current advice is that boys under 5 should not be having this as a sole source due to there being risk factors in later life BUT please do not be alarmed, this is what I have heard you'll need to do your own research to see what the evidence says. I haven't looked into that properly as I have a girl.
There is a product called neocate which is not derived from soya or cow milk at all so should be tolerated by him but the problem will be getting a prescription as it is v expensive for the nhs. The only one we could get dd to take was 'neocate active blackcurrant' this product is for over 12 months so you may be ok. It comes in unflavoured too but is pretty gross. In my experience you stand a better chance getting a prescription for this from the dietician rather than GP.

On his cereal/foods I recommend fortified almond milk or koko coconut milk, both readily available. The oatly is nice too but I just prefer the texture of the almond personally.

dd is 2 1/2 nearly and still has issues but manages to tolerate small amounts now without too much bother. For instance if she has something at pre school by accident or the grandparents give her chocolate it is not as bad as it would have been a year ago, so she is growing out of it.

[Bakingtins]

I would suggest you have not a chance of getting a 1 yr old to take any of the hypoallergenic formulas because they are vile! My DS would not touch them. He did fine on a few BFs, Oatly for cooking/cereal, and a calcium and vitamin supplement (under dietician supervision). We made sure he got fat/protein elsewhere in his diet.
I think there are some concerns about oestrogens in soya formula/products for little boys, but this should be less of an issue in a toddler where it is part of the diet rather than a baby on 100% formula.
I didn't find our dietician particularly helpful, by the time we got to see someone I'd done my own research and worked it all out. I was pretty that she had no information available about the contribution to nutrition that breastfeeding can make and I had to find out for myself...

[chocolatecheesecake]

Thanks - I'll research soy milk and boys tonight.

[TinyDiamond]

Bakingtins our experience was very similar as I was still bf until over 1 year. It was when she decided to stop at 13 months we did manage to get her onto the neocate (blackcurrant flavour) but it was not easy.

[skinnyrascal]

Push for referral to dietitian! If CMPI is suspected there needs to be proper exclusion. I think challenge once symptoms cleared is supposed to happen to confirm but i've never spoken to another mum who's wanted to do that and my dietitian understood that and didn't push it.
There are concerns with soya, but that is only for pre 6m so your DC is fine! We switched to neocate active at 12m, but very shortly after managed to intro ordinary soya milk. You shouldn't need soya formula, as over 1, as long as soya is fortified with calcium, much like switching to cows milk in non intolerant child.
21oz is a lot, does it not affect his appetite? I was advised 500ml was enough as eating 3 meals plus snacks so everything she needed came from that!

[skinnyrascal]

Sorry just re read re the hunger. Hunger can be sign of intolerance, mine had reflux with the CMPI but despite it clearly hurting always wanted more, almost like constantly drinking soothed it whilst drinking and pain only came on upon stopping.
Good luck

[chocolatecheesecake]

Skinnyrascal thanks for the reassurance re soya. Yes 21oz was a lot but he was still having 3 substantial meals a day (think one weetabix and a banana; or one scrambled egg, slice toast, tomatoes, pear and cereal bar). Since going onto wysoy I've cut him down to 14oz and he's fine on that so I feel happier that he's not having milk unnecessarily.

Looking back at all the sick when he was a baby I feel bad I didn't push harder when I was told it was normal/ a phase...

Dietitian referral next challenge. GP was pretty adamant I would have to wait so I will see whether the nice guidelines could help sway him.