Violent reaction to formula - any experience?

[Catilla]

Hi I'm a mumsnet lurker, never before needed help as everything seems to have been covered, but the time has come...

This weekend we gave ds (5 months) a little formula for the first time (exclusively bf so far with a tiny taste of veg/fruit). It was SMA Gold, a fairly standard choice I thought. He only took in about 10ml if that, and within 5-10 mins he was having trouble breathing, swelling around the face, urticaria anywhere the formula had touched and coming up on other parts of the body too. Rushed to A&E and luckily it faded fairly quickly. But what next?

Today I've been to the GP so at least now I have some Piriton and an EpiPen. But referral looks like it might take months and GP seemed sure that WySoy would be fine. Reading the mumsnet archives I'm not so sure. Most milk allergies seem to cause digestive issues, not an anaphylactic reaction. Does anyone have any experience like this with formula? Are any formulas known to be more problematic than others? I feel scared about the whole weaning process now, plus the reason for starting formula now was in preparation for part-time return to work after Christmas.

Any experiences or advice gratefully received.
Thanks

Just bumping this up for you, Catilla.

My dd (who is now 4) had a bad reaction to formula when she was around 2-4 months (I was also attempting to give her a bottle in preparation for return to work later). She had a very similar reaction to your ds. We tried the soya but unfortunately she had a similar, though not as severe, reaction. It's worth bearing in mind that some children have a problem with both (milk and soya) so I would definitely leave a few days/a week before trying the soya and I would be tempted to make it up and rub it on his skin (on his arm say) before making him drink any just to see if he reacts to it first. We ended up on Nutramigen and because of her bad reflux and other health problems, I ended up quitting work when she was 10 months and staying at home!

I would say she had pretty much outgrown them by the time she was 2. The only thing that remains is an egg allergy. I'm glad you've been referred. Our GP was so unhelpful but the paediatrician was brilliant - the only problem was that by the time we saw him, she had outgrown everything which was obviously great but I had to suffer the whole weaning nightmare with no help! The most useful thing we did was see a dietician at the hospital for help with menu planning etc. so I would push for that once the referral comes through.

Otherwise, take care with the soya and see what happens. If he's OK with the soya, then at least the formula problem is solved! If he's not, there are plenty other ones but get them prescribed by the GP because they are expensive. Let us know how it goes.

This must have been horrific Catilla. We had a reaction to SMA when dd had a few bottles at about 5 months, she got hives and threw up very violently. But we switched to cow and gate and she was fine. Your ds's reaction sounds worse though.

Do you have to give formula? If you start expressing now you should be able to build up your supply and freeze enough expressed milk to last for a while. Your ds will be 6 months by the time you go back to work so can have cows milk in food like porridge(if he tolerates that of course) and if you are only going back part time should be able to cope without milk feeds altogether whilst you are at work as long as you bf before and after. It will make it more difficult on you, but I know others on Mumsnet who have managed (usually because of refusal to take bottles rather than allergies). YOu might want to repost this under breast and bottle feeding to get more responses from people who have done that.

My DD had the same kind of reaction when she was 6 weeks old. We went the breastfeeding only route until she was about 10months old and found then that she could tolerate nanny milk.

She is by no means as bad now in terms of dairy but is still allergic - i.e. will not be violently ill but does still have contact reactions and the runs if she has cows dairy foods. She is now 6 and we keep her diet fairly dairy free although don't have to be obsessive about small amounts of dairy any more (such as in chocolate, or in cakes etc).

You need to be very careful when weaning as DD also had allergy to certin food colourings, tomatoes and eggs - oh and biological washing powder!

Good luck - don't let it get you down - it is managable just a little more complicated that you might have hoped for

Catilla, my son had anaphylactic reactions to milk. Poor you, it's so scary.

The formula you should use is either Neocate or Nutramigen. Nutramigen is made with extensively hydrolysed milk protein and Neocate is made from the amino acids up. So if Nutramigen doesn't work, try the other. Both are considered hypoallergenic. Your doctor should write you a prescription. Maybe tell him you concerns about soya, take in the article a few weeks ago in the Guardian (did you read it?) and ask for one of the above.

Just fyi, you can use the EpiPen through the clothes without a problem. It hurts like hell, but only for a few seconds. I've got quite at least one expired pen. The best way to get the feel for it is to do it into an apple. If you'd like me to send it to you, let me know (jj at flubus dot com -- use 'allergies' as the subject; I have a very active filter).

If he's that allergic, you might want to try an exclusion diet for yourself. If you'd like more info on that, just ask.

Thanks for all the very quick and helpful responses so far.

Buoyed by Mumsnetters' proactive attitudes plus some medics in the family, I've spent most of the day on the phone trying to find the right kind of consultant, and seem to have landed on my feet with someone at St Mary's (luckily we're in London) which is apparently the centre of all things allergy-related. It seems a very under-represented discipline.

What's frustrating is that the hospital we went to on Sat (not our local - we were at MIL's) has a clinic where we could try different formulas etc with a doctor on hand. If we were in their area they'd see us this week. No sign of anything that easy round here. I really don't fancy randomly trying things alone at home (thanks foxinsocks for confirming my idea on how to gradually expose him to things - skin first etc) and also don't want to spend his life avoiding things "just in case".

Ironically ds was resisting taking feeds from anywhere except the breast... but today he agreed to about 1.5 fl oz of ebm from his spouty cup. So at least the experience hasn't put him off bottled milk for life! For the short term I am going to look more at expressing and how it would fit with the part-time working etc. Might need to get an electric pump though! So far he's shown no interest in other food (I tried a little) so I don't think he's going to be an early weaner and manage without milk all day at nursery.

A question for those of you who've seen allergies fade as the children get older - have you had regular retesting? Or tried things yourself? How do you know they are no longer allergic?

Catilla, I had my son tested once a year-ish, then as he stopped having reactions, every 6 months. For him it went 9months, 2+ years, 3 years, 4 years, 4 1/2 years, etc. But he was allergic to soya, also, although it wasn't life threatening. Anyway, that went at the 2+ years test. He tested out of milk (after getting to the food challenge stage and failing) at 5 1/2 years. But he only had anaphylactic reactions until he was about 2 years 4 months, after that it was better.

If you do the RAST or skin tests, remember that there are can be a lot of false positives (my son's wheat score was higher than his milk and he's fine with wheat). The gold standard is an exclusion diet and then reintroducing the food. Not that I don't think your son isn't allergic to milk! Just it's weird getting results with loads of positives when you know he's fine with the foods.

The person who helped me most here (I'm an American expat - my son was 2 years 5 months when we moved .. never had an emergency here, thankfully) is a paed in Central London. I chose him because he has a specialty in allergies and asthma. He was more helpful and talky, for lack of a better word, than my son's allergist (she was nice also!). My second was diagnosed with a milk allergy at 3 or 4 weeks, but outgrew it quickly - in case you're wondering about how I know about the formula. We never used it though, but I had a can of Neocate around just in case. If you'd like a recommendation, I can give you his name and number.

I would echo everything JJ has said! Our skin (pin prick) tests were very misleading - her egg skin reaction was so bad the paed was convinced she must get an anaphylactic reaction when exposed (her whole arm went red) but the blood test confirmed her reaction was just 'moderate'. Meanwhile, milk and soya never even tested positive (so it was classified an intolerance). There were also many other foods that I tried whilst weaning (strange things like peas and courgettes) that made her violently ill and showed an allergic type reaction - she was however never actually allergic to them and when I tried the foods again a few months later she was fine.

What I would say is as your ds is so young it's better to let the peadiatrician lead the way with retesting. Like JJ, we did it every 6 months. With milk, we did it at the hospital (first on the inside skin of the arm, if no reaction, rub on the lip, if no reaction, then ingest a tiny amount then lead up bit by bit to finally drinking 250ml). Once they realise that they are not going to have an anaphylactic reaction, they will probably let you do it at home (I did it at home with soya and egg) but as his reaction was so severe, I am sure they will want to do milk in the hospital environment for the meantime.

Our paed was at Chelsea and Westminster (if that's any help) and was very good - although as I said, we waited for our NHS appointment and by the time we did, she had outgrown most things!

Hello

My son had a similar reaction T 4 months and at 2 is still on nutramigen. We are under the most incredible paediatrician at Northwick Park who specialises in infant feeding problems, he's a paediatric gastroenterologist called Warren Hyer. There's also a superb paediatric allergy specialist at the Portland called Gideon Lack (not sure where his NHS practice is). I'd highly recommend either of them.

I think my son has an egg allergy as he tried it for the first time a few days ago and within 4 hours developed hives all over his body and vomited. Does anyone know anything about whether egg allergies are likely to go with age? We are due to get him skin prick tested on thursday at the london allergy centre and then we will find out if he is allergic to anything else eg nuts..

we were told that children often outgrow egg allergies. I don't think they can predict if a child will or won't though. My dh still has an egg allergy (as does dd) but he is the only adult I have ever met who has an egg allergy!

Dumb question... but does it matter which type of eggs? Does being allergic to chicken eggs mean you're allergic to turkey, pheasant, duck, quail -- ostrich?! eggs, too?

Just a thought......it may be one of the chemicals in the formula rather than just the milk - try organic formula such as babynat - they also do a goat's formula - just a thought...... You poor thing what a fright. Goodluck.

My daughter had severe reaction to normal formula at five months, she rejected Nutramigen as too yucky, but really loved Wysoy. For a couple of months we fed her up on Wysoy plus soya yoghurt and soya custard from the supermarket (which she loved) but then she developed diarrhoea (six dirty nappies a day) -- soya intolerance. So now (she's eleven months) she's on Neocate. Anyone on here still using Neocate? Anyone got any recipes or other tips? She can't have any dairy, or eggs, so it's hard work.

Meant to add, we're still breastfeeding 2/3 times a day but I'm a bit fed up with it now, especially as I've had to cut right down on dairy stuff myself - boo!

has anyone here tried goats milk formula, i have been using it for about 1 month and my little ones excema is slowly clearing and his sticky eyes have all but stopped. Did try normal formula for a day and both skin and eye flared up again. I tried nutrimigen but changed to goats, too sleep deprived to remember why now does anyone have any views or information on goats milk????