To get an Epipen or not - WWYD? (long, sorry)

[Mishtabel]

I have been reading this thread for a while now, and have had so many questions answered as a result - thank you all. I still have so many questions, but I will control myself and ask only my most pressing question for now.

Some background...
DD (13 months) has a dairy allergy, and suspected others. Her last accidental exposure to milk (wouldn't have been more than 2-3 drops from an 'empty' cup'), resulted in hives, nasal congestion, though runny nose, crying/coughing/gagging, grabbing at tongue, drooling and slightly swollen eyes. No compromised breathing though. I took her to A&E where she was observed. Antihistamines were decided against due to risk of respiratory depression (SIDS sibling), and it eventually resolved itself, though she remained congested the next day. She also gets hives just from skin contact with dairy. We've been referred to a specialist, though still waiting for an appointment.

I'm from Oz, and over here epipens are available without a script (much to the pharmacists surprise). Although DD's allergies haven't caused an anaphylactic reaction, I am always so scared to introduce anything new, in case this changes, or of another accidental exposure, resulting in a worse reaction. As a result, her diet is pretty bland. I don't know how long I will have to wait for an appointment with a specialist, and would really love to be able to expand her diet in the meantime. I realise adrenalin is a serious drug, and wouldn't use it willy-nilly - I just think it would give me the confidence to try new things (within reason), and also to give the (non-drowsy) antihistamines a chance to work, without me feeling I need to rush her to A&E at the first sign of a reaction 'just in case'.

Another thing is, at the moment, I ensure my family don't bring any dairy out of the kitchen, though, in a couple of months, I am starting my own family daycare, and this precaution wont be possible. Although, I consider myself vigilant in not exposing DD to dairy, I know accidents can, and do, happen.

FWIW I'm a nurse, so, although I know things are different when it comes to your own children, I am confident I know enough on when/how to administer without formal training. Cost wise, they're about $100 (approx £60?) without a script, which my pharmacist said he will reimburse if I end up getting a script.

I suppose what I'm really asking I what would you do? I feel I've lost all perspective on what is rational thinking and what's not on this issue.

Sorry for such a long post and TIA

Morning all..I'm a MN newbie and just came across this thread..my 10 year old daughter was dairy/egg/lentil (same protein) allergic from birth...she stopped being allergic (we think) last August time..I have a friend whose son also stopped being allergic at around the same age...I just wanted to tell you this because I have lived with the lifestyle of being an obsessive label reader..taking packed lunches to parties etc...she's always taken it in her stride..never got upset when couldn't have stuff...supermarkets are so much better these days...10 years ago it was a very bleak choice of products..my circle of friends have always been so supportive and thoughtful at times like parties and Easter (she could have dark chocolate) etc. So I never thought it would happen and she would always be allergic..just wanted to tell you my experience and there is hope..the consultant always said she might grow out of it but after each stage (by school start, by 7, next year etc) I'd given up hope but then it happened with no explanation.

Mishtabel, I am in Oz but only since Aug 2009 - lived in the UK my whole life before that. That GP you saw is an idiot, ignorant and dangerous. Ignore him completely. And as for the bollocks advice re bf'ing!! What a twat.

I think there are other forms of dairy you could try if you want; my friend whose DC have multiple food allergies has switched to goats' milk because they don't react to that, where they do to cows' milk and has definitely found it helps.

SeaStrand - glad that your DD has grown out of her allergy, that must be a relief.

Thanks thumbwitch....it's been quite emotional...she went through a period of trying everything she'd never been able to before and we were worried she'd eat too many cakes and stuff but now the initial novelty has worn off she's pretty much still avoiding dairy stuff cos she doesn't like the taste...she still has cups of WYSOY formula morning and night which she enjoys..it's just wonderful not to have to scrutinise menus and interrogate waiters anymore! I took photos of her having her first dairy ice cream bought from an ice cream van last summer..the look on her face was beautiful..but she much prefers Swedish Glace dairy free icecream still. My heart goes out to anyone with a nut allergy..thankfully she was never anaphylactic even though she was quite poorly at times..we had to have the MMR under hospital supervision "in case" they said...dreadful day that was.
Am new to MN it seems really nice and friendly. I'm amazed at the seemingly endless number of threads though! There aren't enough hours in the day!

Seastrand - just lurk on AIBU for a while - we're mostly nice, but there are some "baptism of fire" experiences on there.

Mishtabel Epi-pen "Have you 'made friends' with it yet?"

Thanks for asking. We have made friends in regards that I let him tag along when we go out. He has been introduced to DS. However I'm not quite ready to accept he may become DS best friend yet - but I'm working on that!!!

I agree you need to chase up your appointment.

thumbwitch....ok! Thanks!

Seastrand, thanks for your post. What a lovely surprise that must have been for you and your DD. Ice cream is one of the things I would just love to watch my DD enjoy one day. Sorbet's not quite the same somehow. Would like to try DD with soya as that seems to give so many more choices, though have read many who are allergic to dairy are also allergic to soya, so I'm a bit hesitant (though she has had soya in biscuits with no problem)
Yes, mumsnet is huge isn't it? Very supportive place. As for AIBU that Thumbwitch mentioned, though very entertaining, I'm strictly a lurker there

Thumbwitch, I hope you're enjoying it here. Is it a permanent move?
Question, when you have the time; how do antibodies show up on the RAST test or SPT if there has been no exposure to the source in question (such as Whelk's DD with the egg)? Is it really just that there has in fact been prior exposure, say, in trace amounts?

Babybarrister, that's good to know - is it really only certain times of the year dairy is added? Not that you'd expect dairy in potato crisps at any time really . We had take-away today after shopping, and I was at a loss what to get DD (besides chicken). The lady serving us suggested potato gems and assured me there was no dairy in them, 'only potato'. I bought a few but tried one myself first - am certain it wasn't only potato as it was very creamy inside. Glad I didn't just trust what she said and tried it first. Think I'll stick to chicken when out and about

Mumbar, glad you're getting comfortable with the ever-presence of the epipen :)

mishtabel - yes it is a permanent move, DH is Aussie and his mum is on her own here. Although technically we have the option to reconsider in a couple of years, I doubt we'll go back to the UK. Not quite sure how I feel about that though! Part of me is highly reluctant to give up my UK-ness (still have my house there, still need to go back at least once a year but that's mostly to visit my Dad, don't want to lose my UK driver licence, that kind of thing)

Re. antibodies when there has been no overt exposure, well, funnily enough my friend with the DC with multiple allergies was just talking about this earlier on FB. Her older DS tested positive for antibodies to egg, despite never having had it - except through her, either when he was in utero or in her breastmilk, as she was a big fan of eggs. So she cut eggs out of her diet - the symptoms receded (exclusive BF baby until weaning).

But there is another option - as you probably know, being a nurse, people who have e.g. blood group A have automatic antibodies to blood group B, and vice versa - well, those antibodies are created without any exposure to the opposite antigen. So the thinking is that it's down to microbial mimicry - that is, some microbes have similar antigen patterns on their cell walls that trigger the antibody production.
It is possible that this happens in food allergies as well, where there is no known exposure to the antigen; but it's less likely than exposure either in utero or through BM.

Re the milk powder in plain crisps - I don't know what milk powder baby barrister is meaning there, but whey proteins (from milk) and lactose (milk sugar) are frequently used in the food industry to bulk foods of the most unlikely types. One doctor, who now runs a clinic for lactose-intolerant people in Wales, is enormously sensitive to it - and discovered it was in Greek beer, of all things!
Make sure you only get decent chicken for your DD - you'd be horrified what they put in it to get it to hold more water, so you get less meat for your pound. Mind you, it's not just chicken they do it to.

Hope that helps a bit anyway.

Thank you Thumbwitch! That makes sense (as much sense as this whole allergy thing makes anyway). I was a bit worried that DD might show negative to things she may actually have an allergic tendency toward, simply because I hadn't knowingly exposed her to them.

That's shocking about the chicken. When I buy chicken (to cook myself), I try to make sure it's free-range, however a friend was telling me about a tv program she watched the other day which showed just what 'free-range' can actually mean - suffice to say my image of happy little chickens roaming vast green pastures has been shattered

I rubbed a tiny bit of cocoa on DD's skin today, which resulted in a singular hive. Not sure what to make of it, though was hoping for no mark at all of course. I know a cocoa allergy is probably trivial compared to a dairy allergy, but I can't help but feel a bit sorry for her :( Hopefully cocoa is something they can do a skin prick test for (would hate to deprive her for nothing)

ohhh, you wouldn't believe some of the stuff the food industry does in the name of profit. I did my first degree in Food Science, and by the end of it I was so disgusted I couldn't bring myself to work in it, so worked in public health instead, in blood transfusion and then hospital labs. From being a moneygrabbing -conscious 18yo, I had developed a tree-huggery social/health conscience round about my 20th birthday - it's a good job I didn't do pharmacy at Uni after all! (my first choice).

Speaking of the food industry and the mighty dollar, in my search for dairy-free alternatives, I came across the subject of 'bobby calves', and the inhumane way they are often treated. I don't know what I thought happened to the offspring of dairy cows until now, but now that I know, I'm even more compelled to give up dairy.
I find blood/blood product transfusions fascinating. Though I always had a healthy respect for the dangers associated, it was great to see people pretty much transformed right before your eyes. Sounds like you made good choices :)

Thank you!
I tell you, if you start reading any of the books devoted to exposing the food industry, you'll probably have heart failure initially! Then you'll do one of three things:

1. Go "meh", after all we have to eat something and not worry about it any more
2. Turn into a complete vegan
3. Carry on similar to before but with an educated eye to the more ethical products wherever possible.

This is what happened to all our class - most fell into category three or one, but a couple went for category 2. I was category 3 - looks like you would be too. :)

Your right - would love to think I could be a 2, but realistically will most likely be a 3 :) I wonder if there are any 'ethical' dairies in NSW....

There is one: see this article about it - it has the links to the farm itself as well. sadly, it's in Tasmania, and I'm not sure how far they send their products. :)

Hi have read this thread with much interest, got apt for epipen this afternoon and thought I'd have a quick catch up first.
With regards worsening reactions to allergens, does anyone know a handy website with this information on? Am struggling with mil, ds has hx of hives, worsening excema and runny nose/eyes with dairy and hives with eggs/sesame/spinach and now hives from ??nuts helping my mum fill up the bird feeder :(
Dairy seems to be fixed now at 15mo, after working through eggs we finally had pancakes yesterday with only one late hive and a sore bum/nasty poo this morning and crying overnight.
Mil said yesterday that she doesn't think there's anything wrong with him and she hasn't ever seen a reaction. She believes the foods he has 'reacted' to in the past were just too strong for a baby and I'm overreacting. Tried explaining a bit of immunology but she won't take it on board at all. Grr! Because he's grown out of dairy and nearly egg, she thinks he will from everything else too. This is the mil that continued to give him her homemade biscuits with butter in while he was on pepti-j.
He had bloods last time for coeliac (which I have) and rast but the ig was low so they didn't rast. Not sure I understand that one as at the point he hadn't even seen a peanut or shellfish which we have avoided
Anyway, sorry to hijack but wanted to say good luck with the dairy free (i didnt know the constant vomiting for 9m was all my dairy) and I would say Yes to the epipen, better safe than sorry. Deffo try skin testing, I did arm-face-lip-tongue with all his new foods xxx

Pinkism, good to know your DS has outgrown the dairy at such a young age. Everyone in RL told me DD would outgrow hers by a year old, but it's certainly not what the research says, and not our experience either. Sounds promising with the egg too.
I came across a website the other day that had percentages of how many with allergic reactions go on to worse, similar, or less severe reactions - of course I can't find it now, but if I do, will let you know. Your MIL sounds like mine 'Surely a bit of yoghurt wouldn't hurt her, the poor thing', like I'm deliberately depriving DD for the fun of it. Refuses to believe a bit of pizza crust caused her eyes to puff up. In all fairness, if I hadn't seen it, I would've doubted it too. Thanks for your well wishes (I haven't gone dairy-free yet, but have cut right back)

Thanks for the link Thumbwitch. Actually, that farm was also mentioned on the site about bobby calves. The article/letter you linked to was great - nearly brought a tear to the eye I went on their site, and apparently they don't, as yet, supply to NSW but are looking into it. I'd expect only Sydney, though, and I'm up further, in prime dairy country (we actually overlook a dairy farm), though no organic/ethical dairies nearby unfortunately. I was trying to find one by googling, and I came across an article in a mag called 'Stock & Land' in which farmers were upset about Coles etc putting their milk price down. I posted a comment (which I never do) suggesting they look into organic/ethical dairy farming such Elgaar Farms do. I'm sure I came across as very ignorant and fully expect a virtual beating by offended dairy farmers

Thanks Mishtabel if you find it I would like to have a look.
Just back from his apt and he's going to write a letter to me that strongly advises against giving any of his allergens because he could have a very severe reaction.... so I can show it to MIL

pinkism - glad that you have a sound doctor there who is willing to help in the battle with the Ignorant.
I have had similar battles with my family and the MIL - although DS has no known allergies, I have strong intolerances to wheat and tomatoes (do horrendous things to my gut --> IBS, acid reflux, pain, fatigue) and whenever I eat chicken or pork it makes me anywhere from nauseous up to sick migraine.
So, because I struggled for 30y with constant digestive ishoos, I didn't want DS to go through the same - so have avoided giving him all those things. But MIL! "oh I just let him have a bit of ham" "oh, he's just had half a cabernossi" (foul little redskinned processed slurry-in-a-tube type sausage made of pork) "oh, I've made some little cakes, can he have one?" (while waving it in his face). Makes me VERY cross. DH is actually almost as bad - giving him roast chicken from his plate, letting him have tomato ketchup.
Now, none of these are dangerous to him - there are no hives, no puffing up - but if he IS affected, his guts will cop it and they have a couple of times. I wanted to wait until he reached a stage where he could say "my tummy hurts after that". Anyway, that's a side issue. Just wanted to sympathise with the whole MIL thing.

Mishtabel - I look forward to hearing about your virtual beating! I'm sure you won't get one, more like a virtual pat on the head and "there there dear" with some virtual eye-rolling. Coles and Woolworths are pulling the same stunt as Tesco and Sainsbos/Asda - competitive price-slashing, but of course it's the producers who suffer for it.:(

Thumbwitch, (cabanossi) 'foul little redskinned processed slurry-in-a-tube type sausage made of pork' - I will never look at the the same again (apt description though). How old is DS?

Pinkism, did you get an Epipen?. The letter is a good idea, though my mil knows better than the docs anyway

He's 3.3, Mishtabel - I thought once he could speak we'd be able to try things but no, it's not that simple - currently he's hopeless at saying whether and where things really hurt, unless he's been hit - and even then he doesn't always get it right! so a bit longer - until he can reliably say "yes, my tummy hurts here".

No we didn't get one, he said he would rather avoid giving them out as people might be less careful if they have the 'antidote' there, plus he's still only little- 13kg. He said if I really wanted one I could speak to the allergy nurse who is available most days by phone, pleased I have her to ask.

Mishtabel, if you're looking for a non-rice alternative to cow's milk, have you tried oat milk? I find it reasonably inoffensive, although it tastes best when in porridge.

Thumbwitch, yes from memory they're not too reliable at that age. Your MIL story reminded me of when my MIL had made some pavlova. She showed it to DD (11 months at the time) and said 'Oooh look pav, you'd like some pav wouldn't you? Can she have some pav?' Now, I don't know whether DD is allergic to egg, but as it's on the list of foods most likely to cause allergies, I want to hold off on it until she is tested. Also it had cream on top, so I said no, she can't. 'But she's not allergic to egg is she? And I'll scrape the cream off' Er, still no. Cue (from mil) sad face, head tilt and a 'sorry darlin, mummy said no' 'How about some meringue?' It is frustrating!

Pinkism, good that you have an allergy nurse that you can ring. There is one where I live, but she does the cytotoxic testing, which is apparently not very reputable, and when I had it done, I was told DD very reactive to potato (she's fine with it), and cocoa (mmm, might be right) and that she can have milk, but to be careful with how much (ah, don't think so somehow). When I rang to tell her of DD's latest reaction to a couple of drops of milk, her only advice was not to try her again until she's 5 or 6. So, in short, she's not much use.

AngelDog, thanks for the tip. I actually bought some last week, but haven't tried it yet, will do though. Do you know if that can be used in cooking in place of regular milk?

I've been using it in cooking and it seems okay so far, but I've not made anything like white sauce yet. I think it's fine to use, but whether it tastes good enough might be another matter.

I get the calcium enriched sort.