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Allergies and intolerances

anaphylactic reaction to milk anyone?

14 replies

ecomum · 23/07/2005 13:19

My DS has an anaphylactic reaction to formula milks including some hypo allergenic types eg nutramigen.

He's 1 now, and I'm finding play with other children v. difficult to cope with. He doesn't go to a nursery and I've stopped going to play groups/mum's coffee mornings because there's milky drinks, yoghurts and biscuits everywhere which would be literally lethal if he came into contact with them. Its just too stressful!

I asked my dietician if there were any other children in the area with the same problem - but it turns out my DS is only one in the whole borough.

At this rate he's going to grow up with no social skills. Have any other mum's out there found a way of dealing with this?

Thanks

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tatt · 23/07/2005 14:06

hi ecomum I don't have this problem but we have a child with an anaphylactic reaction to nuts and one person who has to avoid milk but doesn't have anaphylactic reactions. The best advice I can offer is to join the anaphylaxis campaign and to go to their next meeting, even if you have to travel a long distance to do so. There will almost certainly be other families there. When I went several families had children with multiple allergies that included milk.

What sort of tests has he had? Do you know if he's reacting to everything in milk? Read recently that casein was the main allergen.

Social contact can be a problem but you will find there are some mothers who will make the effort to provide a safe environment. There are families where a child visits us but mine isn't asked to their home. I will always offer to send food and I provide a packed lunch if they are taken out. When they start school the school nurse may be helpful although they are a bit inclined to go OTT.

I won't pretend that life can't be pretty difficult at times. As time goes by and you realise that you can cope with the reactions and your child doesn't die it will seem a little less terrible than it does now.

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PeachyClair · 23/07/2005 14:10

Not anaphalactic fortunately, but we are all lactose intolerant (well, 3 of the 5 of us are anyway).



I would suggest two ideas: either contacting a toddler group and asking if they could make their event a milk free environment (if asked this I would say Yes), or contacting HomeStart to see if they have any family groups in your area- the one I used to run, I selected all snacks myself and so could exert control.

This situation must be horrible. I did find www.foodallergy.org/ for you, whcih has a children's network, maybe they can help? Also www.milkfree.org.uk which was gounded by someone in a similar position to yourself, from what I can see.

Hope that someone can help more

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ecomum · 23/07/2005 20:24

Thanks tatt and peachyclair

Have contacted the anaphylaxsis campaign and checked out the milkfree.org website which looks really good.

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onlyjoking9329 · 23/07/2005 20:38

it is very difficult i had the same reaction to milk which meant my twin babies had to have soya milk as me getting milk on my skin ended up with hospital stays, i really have no tips for you but just to keep your fingers crossed that your little one grows out of it, have you had lots of allergy tests done ?

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coral · 23/07/2005 20:54

Hi ecomum,

I empathise with you and your ds completely! My dd has been anaphylactic to milk since she was tiny and, even though she is now at school, I can still remember the stress of having to cope with it when she was little. The hardest bit to deal with was definitely between walking and reasoning which I reckon must be where you are at at the moment. However, I promise that as they grow up and understand a bit more it does become a lot easier to deal with!! Not that that is much help to you at the moment I'm sure!

I'm interested to learn that your child is the only one in the borough with milk anaphylaxis. How does your dietician know? Having said that though, although I know quite a few children who are anaphylactic I have to say my dd is the only one who has problems with milk. Are you in a London borough? If so which one?

I too found exactly the same problem you are experiencing with playgroups and gave up on a lot after only going once because I couldn't cope with all the potential hazzards. I think I must have been lucky though because I found one which took me seriously and was happy to supply "safe" biscuits which helped enormously. I personally found it easier to take my dd to organised groups such as music groups or tumble tots where drinks and biscuits were not offered and, because of the nature of the group, random eating and drinking during the session was not an issue.

Once my daughter started walking I was fastidious in teaching her strategies to keep her safe and reinforcing them constantly. For example, she had a very few designated people from whom she was able to accept food (which when she was a toddler was just myself, her dad and my mum - show's you how paranoid I was!!) She was, I am very embarrassed to admit (but in my defence it was to keep her alive) rigorously conditioned to only accept food from these people and refuse anything else. It was hard work but paid dividends in keeping my sanity and even now she will not accept food from alternative sources unless she is sure they have checked with what she calls her "safe" adults first.

Thinking of you and your ds. Coral

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tatt · 24/07/2005 06:55

we've never seen a dietician so I agree they may not know about all faimilies in your area. Although anaphylactic reactions to milk are, fortunately, not that common there will be other babies avoiding milk for non anaphylactic but diffiuclt reactions. Its possible your health visitor might know about them. If yours is uselss I used to talk to others in the same office as they were more helpful (Discovered by accident when mine was out, I used to try and phone when she was after that )

How many reactions has he had and were they all anaphylactic?

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bobbybob · 24/07/2005 07:31

ecomum - you can still teach your ds social skills in areas where there is no milk. My ds is allergic to latex - and so we can't go anywhere where there are rubber toys or balloons. But we go to the local shops (now latex free after I asked) and he says hello to everyone - knows their names, has little chats etc. Okay so they are adults, but it's still social skills.

Once he is older you will be able to meet people at the park etc. which will be a safer environment. You can get talking to them and explain your situation, maybe have them round for a no food playdate.

I would contact the local paper and get them to run an article where your ds advertises for friends. That will catch the eye of anyone with the same problem or their relations and it could be they have a group going that nobody knows about. It will also highlight how serious allergies can be, which is no bad thing.

Or maybe one of the journos on Mumsnet would get involved...

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lunachic · 29/07/2005 01:21

ecomum cant find your number give me a call please 839779 !!

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mummyhill · 02/08/2005 09:10

ecomum where are you based? I have a friend who has two children aged two yrs and second is two months both suffer from galaxacemia (hope this is spelt correctly) and they have been put in touch with a support group through our local childrens hospital.

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mummyhill · 02/08/2005 09:12

Coral it's not paranoia it is keeping your child safe. We have all trained our children not to offer anything to the boys without asking us first and are in the process of teaching the boys who they can accept food from. The nursery has not got a clue with the eldest so his food is sent in for him every day and all the staff have been trained how to use epi pen.

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inmysparetime · 18/10/2005 22:12

my solution to the non-dairy/social dilemma was to give my DS the crust slice from the general toast loaf so I could see from a distance that he had his own. Eventually I started running a toddler group myself to ensure total dairy exclusion. We have fruit and juice instead of biscuits and the kids love it (it's much healthier and impresses parents).

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ecomum · 10/11/2005 23:11

Haven't checked this thread for a long while so thanks everyone for your advice.

Coral, I think your strategy of drilling to take food only from safe adults is very sensible, and its something I will be doing with DS when he's older.

Mummyhill -I am based in Todmorden which is between Rochdale and Halifax. Not exactly city centre so that's probably why my DS is the only child in the area with this problem.

I now take him to a music/signing class with no food involved - last week however another baby just gave him a kiss, and his face came up in a rash. I'll just have to accept that nowhere will be completely safe.

But I am learning not to panic, and hold off the antihistamines unless the reaction looks to be serious. If its just skin contact with milk, a rash can flare up with no other symptoms, then die down by itself within an hour.

So I am getting a bit more confident about taking him out and about.

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lunachic · 10/11/2005 23:50

ecomum are u still about ? hi

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vnmn · 14/04/2006 15:30

Hi ecomum,

My 3 yr old ds has similar problems with milk including nutamigen among other things and my doctor and health vistor dont seem to know anyone with a similar problem .I live in wales.I too dont go to toddler groups but go to tumble tots as food is not allowed inside .I take him to the park on a daily basis if the weather is good.Usually, kids would have eaten before they come-although sometime they play with chocolates in their hands and then we just leave.But now at 3 my ds is growing into a really sociable little boy.

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