Do you suppose we can actually DO anything about this idea that only nut allergies are really serious?

[BlameItOnTheBogey]

Inspired by comments on another thread. But serious question: what can we do to educate people that there is a not a pecking order in terms of which allergies are 'worse'? And that an anaphylactic reaction to e.g. dairy is just as serious as an anaphylactic reaction to nuts?

I am so sick of people saying 'oh well, it could be worse, she could be allergic to nuts' when I tell them that DD has a serious and life-threatening contact reaction to milk. I am also sick of others saying 'oh yes, my sister's cousin's dog is also lactose intolerant'.

I know it's not their fault. But it is frightening. Because unless we can make sure that people understand that all anaphylactic reactions are equally serious, then I worry about how I can ever feel confident letting dd out in someone else's care.

What do you think? Is there anyway we could do anything about this?

[greenbananas]

I don't know what we can do... is it time to don the orange capes?

Maybe we could get ourselves on all the news channels somehow....

[WitchesBrewIsMyFriend]

Maybe as "mumsnet collective" 'we' can do something. A campaign about allergies and how serious a dairy/egg allergy is.

I think it is because nut allergy is the one that people know of and the others are less well known (to those non suffering)

Contact MNHQ and see what they can do to help?

[BlameItOnTheBogey]

Yes I think that is what I was thinking, some kind of collective effort. OK let's see how many people post here in support of doing something and then take it from there....

[Acekicker]

I think part of the problem is that 'dairy' and 'wheat' are so very 'fashionable' as 'intolerances' amongst some people who for whatever reason are trying to control their diet (am thinking of people like my SIL who has claimed intolerances to both and told me how much better she feels now she cuts them out of her diet whilst ordering cheesecake in a restaurant 'as a treat but I know I'll suffer for it tomorrow'). You never hear anyone claiming that they are intolerant to nuts do you?

There needs to be much better education about allergies full stop. Nuts have tended to hog the headlines over the years (the Anaphylaxis Campaign was set up by a guy whose daughter died after eating something with nuts in in Debenhams, if you look closely at the magazine it always says 'supported by Debenhams' on it somewhere). Also notwithstanding the wretched 'traces', people tend to think nuts can be easily avoided as it's just one ingredient that isn't all pervasive like eg dairy.

I do feel for those of you with dairy anaphylactic dcs (and other allergens), some of the comments on the other threads were very scary and misinformed. I think it would be good if MNHQ supported something but I suspect the best route will be the AC.

[greenbananas]

Yes, I also agree about 'fashionable' intolerances being a problem. When I say my DS is allergic to dairy and eggs, quite a few people seem to disbelieve me (and some also frustrate me by telling me all about their brother's wife's cousin who is also lactose intolerant). However, as soon as I mention that DS is also allergic to bananas, lentils and peas, they sit up and take notice.

About a year ago, we called an ambulance after DS put his hand in an 'empty' coffee cup then touched his face. He got hives all over his face, and his eyes and mouth swelled up rather alarmingly (his whole face was distorted). Then he went very white-pale and lay down on the floor, not moving. At the time, I was terrified, but now I am almost GLAD this happened. As well as having the opportunity to practise using the epipen for real, I now have a story which scares the living daylights out of people who might not otherwise take DS's milk allergy seriously (e.g. pre-school staff, parents who think I am just being pfb when I ask if I can wipe off the yoghurt which is dripping from their child's face and fingers).

I was only half-joking about the orange capes. I have a sewing machine and am happy to make some

[freefrommum]

Totally agree with everything posted here. Think the main problem is the lack of understanding re difference between intolerance and allergy especially as so many people bandy these terms around willy nilly. It is also made worse by the people who think it is fashionable to say they can't eat this or that. Nut allergy has become widely recognised but the fact that it's possible to have an anaphylactic reaction to milk, wheat, egg etc just isn't understood. Wonder if the Anaphylaxis Campaign could do something to raise awareness? Think we need something in the media.

[rosehb]

Yes definitely agree. (DD severe allergies to milk and egg)

I love what greenbananas said about having to deal with dripping yogurt faces and needing a story to 'scare' people. Thankfully in 3 years we've never had to use the epipen but I sometimes wish I had a photo from the worst reactions as people really don't get it.

[BlameItOnTheBogey]

Yes completely re dripping yoghurt faces. We went to a party yesterday and dd was on the bouncy castle but I had to get her off because there was another small child on there clutching a piece of pizza. I can't risk her coming into contact with it (or even the crumbs). But when you say this to other parents they look at you like you are crazy. It's awful - I am SO far from being a precious parent and I hate that look they get in their eyes as if you are making it up...

[mintyneb]

I don't have any solutions but agree we need to get recognition that other allergens are just as serious as nuts. What worries me though is that even among the allergy community the view that only nuts are dangerous is so strong. There are a lot of threads going at the moment about nuts in schools and I don't think that there has been one parent demanding a nut ban to 'protect their' child coming out in support of us with dairy allergic dc and how the school can help us.

It's not a competition to see who has the most vulnerable child, we should all be supporting each other.

As to everyone else, I agree that we are up against a general fashion of being intolerant to certain foods which doesn't help. I am bracing myself for the reactions of the mums of birthday children whose parties DD has been invited to when I tell them about her dairy allergy!

Will go now before I wind myself up too much!

[RidcullySentTheBursarMad]

I completely agree with the comments made here (dairy anaphylactic ds, who also has allergies to several other things including nuts). We actually asked the allergy nurse who works with our consultant to go into ds's pre-school to educate the staff on allergies, what symptoms to look out for, what to do in the event of x,y,z. She was absolutely fantastic and I think them hearing it from someone independently of us really helped.

Otoh, we have heard plenty of "oh, my friends's, cat's grandmother was lactose intolerant too", even from a family member who himself suffers from a life-threatening allergy.


Oh, and my pet hate? Parents who allow their children to spread their entire ice-cream all over the slides/swings in parks, so ds can't then play there.

[Whelk]

Ridcully - that's one of my bugbears too (the icecream slathered all over the climbing frame)

It's almost embarrassing to admit that when dd2 was touched by dd1's hand which had previously touched milk and came up in multiple hives I took a photo. Just so I could show the f**kers who disbelieve me. You know my mil and other members of the family who are supposed to care

[Likeaninjanow]

I'm in! I seem to be in a permanent state of rage lately, and I'm pretty sure it's due to all the allergy related AIBUs we've had. I really hope there's something we can do to raise awareness.

[ChocaMum]

I agree with everyone above. Although my dd has anaphylactic reactions to nuts as well as others, it seems to be that people only take me seriously because I start the list with nuts. The number of people who I know who have chosen to cut out dairy or egg for 'lifestyle' reasons or intolerances which I can't imagine are genuine because they can treat themselves to these foods too, makes dairy and egg seem less likely to be a true allergen.

Playgrounds and soft play centres are a nightmare because of the number of kids with all sorts of snacks running around the place. It's almost guaranteed that nuts, dairy or egg will be in these snacks and skin contact is all dd needs to have a reaction too.

I hope there isn't a competition type of attitude amongst the allergy mums. I had got a different impression that most parents, like myself of nut allergy dc's didn't support a nut ban, because there was never a genuine ban and it gives a false sense of security to staff and parents, while education on how to manage allergies is what I would think is more helpful.

I think education is definitely key. The word allergy is thrown around by all sorts of people and so anaphylaxis seems to not really be understood. Most people seem to think dd will get a bit of a rash and really don't look convinced when I tell them she could stop breathing and die on skin contact of these foods. Even family have taken some convincing, and still they don't get why we avoid certain high risk situations.

I am all for supporting any kind of campaign to help raise awareness on all anaphylactic reactions. Maybe some parents would start to think about cleaning after their dc's in public places, which I had always done naturally before we even knew about dd's allergies and when looking after anybody else's dc's.

[ChocaMum]

I generally avoid the AIBU threads so I've probably been happily oblivious to a lot of what's been said though.

[BOOareHaunting]

I'm on board. and try telling people your child has allergies, epi-pens and is allergic to ketchup.

I get the look all the time!

There definatly needs to be an education for people that in fact your body can react to anything (that has a protein - or the sciency bit!) because if your body recognises it as a 'allergen' then it will start producing histamine.

What I find hard to digest is how people readily accept some medical syndromes/ illnesses but question allergies and the 'life threat' they present.

As if we live the way we do for fun.

[BOOareHaunting]

FWIW my friend still insists her DD is allergic to 'scrambled egg in the microwave' (it makes her sick) and pine nuts (she had a coughing fit after one once, was bad but did stop with no AH) but her DD eats eggs and pesto all the time.

However whenever DS has hives she's totally blase about it and him being fine despite the fact he could have (as has had) a bi-phasic anaphylatic reaction.

[Peachy]

DS1 has recently developed anaphalactic allergies to cherries and apples: you never realise how many thing have apple in do you...

He also has a casein intol which IS serious for him (ie until it was diagnosed he lost weight - from birth- and could have died, he reached 4lbs) . Casein is a common severe intol in kids with ASd. But whilst incredibly painful (I have it too) not an allergy. It works both ways though: ds4 is given astuff with milk in at nursery because it's not as if it's an allergy- no it's not. Still you would not choose to inflict crippling stomach pains and diarrhoea on a child surely?

But of course the allergy is by far the biggest risk now. And isn't to nuts (yet) but I have to say up until this thread we've only met people who want to help (bar the NHS waiting list anyway!). .

[giraffesCantDookForApples]

anaphylactic shock death in my area recently

[greenbananas]

Likeaninjanow, yes these threads wind me up too, and sometimes I wonder why I read them, but I then think it does us good to have a moan sometimes. Lots of RL people are lovely and do try to understand, but sadly we all encounter disbelief sometimes. When I read other people's stories, I feel less on my own with this

Nobody has yet been more disbelieving than my sister. She said "He can't possibly be allergic to all those things! You're just being dramatic" Ho hum...

Playgrounds and soft play centres are a nightmare because of the number of kids with all sorts of snacks running around the place.
Yes, I find those situations are difficult too, mostly because it tends to be parents that I don't know who are letting their children run around with messy snacks in their hands (and abandoning bits of buttery sandwich in the ball pit where they are tricky to find/clean up). I still find it hard to be thick-skinned, although I am becoming better at it. Last time we went to soft play, I found a toddler actually eating yoghurt inside the soft play area and took her gently back to her mum, smiling apologetically and saying "they're not allowed to eat in there" - the mum looked at me like I was some kind of officious freak!

What CAN we do to make more people understand that any allergy can be serious (and that serious intolerances are also no joke)?

[TheOldestCat]

I second the suggestion to talk to the Anaphylaxis Campaign to get some ideas on how to spread the message. They've been so successful on promoting the idea about nut allergy, but they do stuff on other serious allergies too.

I'm allergic to nuts and when I was a kid in the 70s/80s it wasn't well understood at all. So you can make a difference.

[inmysparetime]

My DS has a milk allergy, he is 10 so now reads his own labels and manages which foods he can have at e.g. Scout camp or school.
I used to go to birthday parties with him and help out while surreptitiously checking labels. People do give you odd looks though when you ask to look at packaging and don't mind fishing it out of the bin!
It does annoy me when people invent "allergies" for their DCs because it makes people not take my DS seriously when he tries to avoid milk in foods.
One parent at a day nursery I worked in invented several "allergies" for her son, I think it was 10 different ones at one point, although she would send in alternative foods packed with basically all the allergens "for a treat". we spoke directly to the child's dietician at one point and found the only diagnosed allergy was wheat. That kind of thing really winds me up.

[greenbananas]

"the only diagnosed allergy was wheat."
I have mixed feelings about this. Yes, it is very bad when parents 'make up' allergies, but I also feel some sympathy because for a long time people thought I was making up DS's allergies. I think parents should be taken seriously, even if you secretly think they are making it all up. I really struggled with people who told me I should believe the health professionals, even though I knew the health professionals I had seen were wrong about DS.

DS's allergies weren't 'properly' diagnosed until he was over a year old, and I saw about ten GPs before anybody was willing to refer him to an allergy specialist. The food diary I kept (which showed that he was reacting through breastmilk) did not constitute 'evidence', apparently. When weaning, I didn't give him foods that I knew would make him poorly, so there was no clinical history of reactions. Even after a trip to A&E when he touched egg, I was told "well, don't give hime eggs then". There is still no 'official' record of him being allergic to pulses as they didn't test for this and his reactions have happened since we last saw the allergy specialist (major hives and some wheezing but successfully treated with piriton at home).

[inmysparetime]

My main issue with that situation was that the mum's "blanket ban" on several major food groups was dropped at parties "for a treat" which made a mockery of allergies in general. Also, I knew a child at the nursery where she worked, and whenever that child had a food allergy identified, this woman's child would magically have it too.

[greenbananas]

inmysparetime - it's stuff like that which leads to mums like me not being taken seriously