Possible CMP allergy in 18wk old - advice please (sorry, long)

[ChilliBanana]

My DS is breast fed but as I'm going back to work in a few weeks, I thought I'd introduce some formula just in case I can't express enough at work to keep him fed. He'd been in NICU when first born and had some aptamil then with no problems, and had one of the ready made cartons shortly after bringing him home.

The first time I gave him powder he guzzled about 4oz and then a few minutes later I noticed raised welts around his mouth and neck. They lasted about half an hour and did not seem to bother him so I wondered if I'd just not cooled the formula down enough and the heat had irritated his skin.

We gave him some more on the weekend and this time it was worse and obviously distressed him as he was rubbing his face and whimpering. I did some research and I'm worried he has a CMP allergy, so we saw the GP today.

When I told him I thought DS had a milk allergy and why, he said he can't have a milk allergy if I'm breast feeding, because that's milk. After I picked my jaw off the floor I explained the difference between formula and breast milk and he just told me to try a different brand of formula, and ushered me out.

Now my concern is that if it is indeed a CMP allergy, the next lot of formula I give him might cause anaphylaxis. Am I being a bit PFB, or are my concerns valid? Do I go back and insist on a referral for a skin prick test?

[freefrommum]

Hello ChilliBanana. Oh dear, why oh why are there so few GPs/HVs out there who know the slightest thing about allergies?! You are quite right, it does sound like your DS may have an allergy to cow's milk (as opposed to human milk!) and you should go back to your GP and demand a referral to an allergy specialist if there's one in your local area (if not, a referral to a paediatrician at least). You should also ask for a prescription for hypoallergenic formula (eg Nutramigen, Aptamil Pepti, Neocate etc) while you are waiting for the appointment to come through. Here are the NICE guidelines to wave in the GPs face just in case you come up against any resistance: publications.nice.org.uk/food-allergy-in-children-and-young-people-cg116/guidance
If I were you, I'd avoid giving your little one any more formula milk for now if possible until you have seen the specialist. If your GP will prescribe hypoallergenic formula, give that a go and keep a diary to check whether or not it helps his symptoms. Two words of warning: 1. these formulas are expensive so GPs are often reluctant to prescribe (and if they do, they often don't prescribe enough to last more than a couple of days at a time) 2. most of them smell & taste pretty disgusting so it can be a bit of a battle to get babies to take it (but it is possible, you just have to be very determined and patient). Good luck and let us know how you get on.

[freefrommum]

Forgot to say, I would also recommend contacting the Anaphylaxis Campaign as they can offer expert advice and support. They are also keen on hearing about stories like yours in order to strengthen their campaigns to educate health professionals about allergies.

[ChilliBanana]

Thank you so much freefrommum. I'm annoyed at myself because I knew I wanted a referral but then I doubted myself because he was so dismissive.

Over the last couple of days I've stopped my daily pint of milk and latte intake and it seems to have lessened his stomach cramps a bit. Do you think I should continue to limit my dairy intake while I'm breastfeeding?( I notice the NICE guidelines suggest dietary advice for the mother)

[Cydonia]

Hi, I have had a similar experience to you, my DS is 8 months and breast fed. He had a reaction to some ready to drink formula in November, we took him to A&E as his face and eyes were swollen, he had a rash and was sick and wheezy. He had also had formula before this ( just a couple of the cartons ) without reacting, but I was told allergies can come on suddenly.

I took him to the GP after this, luckily she was better than the one you saw ( shocking! ) and referred DS to the allergy clinic. We had to wait 2 months for an appointment, which was 2 weeks ago and they took a history and did skin prick tests. This confirmed he is allergic to milk and also eggs. I'm now waiting on an appointment with the dietician and a prescription for some pepti junior formula, as like you I'm going back to work soon and worried I won't be able to express enough for him.

It does sound like your DS is allergic, though I'm no expert! I asked my GP about reducing my own dairy intake but she said that what is filtered through to the baby is only a small amount so shouldn't cause a problem. He doesn't seem to have a problem with me having dairy, but he does react to skin contact - I touched his face the other day after I'd been grating cheese and he went bright red and spotty and started rubbing frantically at his eyes :( I am now more careful!

I would definitely push for a referral. Some of the advice I was given from HCP was dodgy to say the least - I could give him powdered formula as it could have been something in the ready to drink version he reacted to, I could try him with a bit of yoghurt, maybe it was a one off etc! This might be true in some cases but DS had what I consider quite a bad reaction and I wasn't going to put him through that again, or risk his next reaction being worse.

It's been very frustrating waiting around for appointments but at least I know for sure now, and hopefully he will grow out of it in time.
Sorry, I've rambled a bit but hopefully some of that was helpful!

[freefrommum]

You should only remove dairy from your diet if you think your baby is showing allergic symptoms eg reflux, excess vomiting, eczema etc when exclusively breastfed. Many allergic babies do not react to the small amounts of cow's milk that pass through a mother's milk but some do.

Please be aware that soya formula is not recommended for babies under 1 and approx. 50% of babies allergic to milk are also allergic to soya so if your GP tries to prescribe Wysoy or another soya based formula, refuse and ask for hypoallergenic formula instead.

[greenbananas]

Totally agree that you should be asking for a referral. See if a different GP if necessary. It's a shame that so many GPs seem clueless when it comes to allergies. Many of us have had trouble getting our little ones diagnosed and referred - but the specialist help is very good once you are able to access it.

There's no need to stop drinking cow's milk yourself unless it is causing allergic symptoms in your baby. Some babies do react to traces of cows milk protein in breastmilk (mine did) but many don't react until they are given cows milk directly.

Good luck with this. Hope you have success at the doctors.

[ChilliBanana]

Thanks guys, you've been really helpful. I'm going to go back and see a different go, hopefully I won't need to stamp my foot to get a referral.

[tempnameswap]

Your GP's advice was appalling OP. See another one if possible, ask for a referral, and then file a complaint. Sounds very much like a CMPA, so I would definitely avoid giving your dc any more formula. Problem is that allergy services are under great pressure so it may be a while before you are seen. Good luck.