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

My DS has an allergy to peanuts. He has never (as far as we know) eaten them - but got hives from contact like your daughter.
Our allergy specialist advised us to carry an epipen at all times, as there is no way of predicting the severity of allergic responses. He has had skin prick and blood tests so we know the allergy exists.
Never had to use it, thankfully, but would hate to need it and be without.
Good luck

So as yet, you haven't had her tested for the allergy apart from your own observation? So she hasn't been tested for anything else either (I think they normally run a batch of tests for common allergens, don't they?)

As a nurse, I'm sure you know that allergies can increase in intensity with each exposure - your DD's dairy allergy has already shown a propensity to affect her mucous membranes (nose, mouth, eyes) - any amplification of this reaction could take it to her airways.

So - seeing that your environment is likely to become less controlled in the near future I would get the epipen just for that. I wouldn't use it to introduce new foods into her diet though - unless she had a very severe reaction to a new food.

Have you experience of anaphylaxis? Have you seen it in other children? So would you be confident that you would know when to administer the epipen?

Either way, I would get it just because of the dairy and your imminent reduction of environmental control.
HTH.

Thanks so much for your replies QuertyQueen and Thumbwitch.

Though I've witnessed anaphylaxis, it has been in adults, and in a setting in which there were many people to deal with it. I appreciate children may be different and that it would be very different indeed if it was your own child, and you were being relied upon to deal with it alone. So, no, in that respect, I wouldn't say I was confident. I have a friend who's a paediatric nurse that I will ask to go through it with me.

My DD's had the RAST test so far - just for the milk and staple food mix. She was a 3 for milk (14.2) and 12.2 for the other, though I'd imagine that was from the milk (?). There's been hives with hayfever symptoms at other times, though can't actually pinpoint reason (was told cocoa and potato, but that was the Bryan test, which I have since read is unreliable)

When I read back through my post, I realised I may have made it sound like I was planning to use the epipen with new foods, or instead of hospital treatment which I definitely wouldn't. I meant just knowing it's there might give me the confidence to try new things - at the moment I have none. Hopefully I would never have to actually use it.

Thanks again

I'm not actually going to have her in daycare. I'm taking a few years off nursing and doing family daycare.

I used to do the 'rub on the arm first' thing, though a few weeks ago, I got my hopes up when I tried this again with milk and nothing happened - no hives or even redness - I thought she was outgrowing it, until she had her reaction last week.

I will try to get some perspective on this, it's just that there's so much unknown about allergies, it's easy to let fear take over.

I do appreciate your thoughts, thanks for taking the time

My dd is allergic to peanuts but she is not anaphylactic. We were flying through Dubai a few months ago and found out with three hours to go that we were not allowed to take her anti-histimeine or however you spell it on the plane with us. It's clarayin that we use.

So I had to go to the GP and get an epi-pen. It was $33. You get two. The GP had no problems at all giving it to us and I have been back since to do her allergy plan for school and he said that she should definitely have one just in case.

What is your doctor saying or the person who carried out the tests on your dd?

We have been to the Children's hospital in Melbourne and she has been tested there as well as at school and she is not anaphylactic.

Now though, we have an epi-pen and once you have one you have to give it to school, carry one yourself and give it to other people's parents or anyone else who is taking care of her.

Savoycabbage, thanks. TBH, I haven't even broached the subject of epipens with my GP (who had ordered the tests). Firstly because she readily admits to not knowing much about allergies, and secondly, because up until a few days ago, I thought they had to be initiated by a specialist. I then found out they were available without a script, which I was surprised with. I will ask my GP what she thinks, but I'm guessing that she'll just say to avoid dairy until I see the allergist.

One part of me thinks just get it, it can't hurt to have one in my possession in case of worst case scenario. Another part is wondering whether I am being OTT even considering it, and that I should just wait to see specialist. There can be downsides, as you described.

Sorry to ask what is probably a silly question, but did they seem to think that because your DD hasn't had an anaphylactic reaction, that she won't in the future? Can they tell this ever?

No, I don't think they can ever tell.

When I moved here from the UK I phoned up GP's until i found one that at least knew something about allergies.

It is soooo fast moving, research is happening all the time and different people think different things. My GP has an infant son who is allergic to dairy. She told me that is a baby throws up on him at his daycare he gets a rash.

At the Royal Children's they told us that repeated exposure does not make the allergy worse.

I think that the whole repeated exposure thing is one of the most terrifying aspects of it all. You feel AWFUL if they have a reaction as you think that you might have made it worse. But if this is not the case, then the worst thing than is happening is that they throw up or have hives. Which is OK, you can deal with that.

When we went to the hospital we had skin prick tests and then we had tests where they gave her an increasing amount of peanut butter. After 1/16th of a teaspoon she got a hive and after 2/16th she got some more hives and after 3/16ths she threw up. But they said she wasn't anaphylactic and she didn't need an epi-pen.

Wow savoy - they said that repeated exposure does not make it worse? Well that goes against the experience of people who are allergic to bee and wasp stings - they rarely go anaphylactic the first time, usually it's after that, possibly not until the 3rd time. I'm quite concerned that they said that, tbh.

I'd work on the principle that it there is always a possibility that it could get worse, regardless - I know immunology is a fast-moving field, and my masters was a long time ago now, but still - any inappropriate reaction of the immune system could have the potential to get worse.

I went to college with a girl who had multiple food allergies (and an epi-pen) - the stress of being at college started something off in her and she started to react to new foods, ones she had never reacted to before (she was 19). It got so bad that almost every week she was having an anaphylactic reaction (saw it, bloody unpleasant too, had to call the ambulance to college for her, she was in a right state). Her immune system was in such a state of hyperactivity that it was cross-reacting to stuff that had never bothered it before - if you want, imagine it like a very nervous sentry who fires at anything that moves because he's so afraid it is the enemy, and probably kills several rabbits, a few bushes and at least one of his own out of sheer over-reaction.
Anyway, in her case she had to drop out of college so I don't know what the end of her story is re. the allergies, sorry. I would expect though that once the source of stress was removed, and she stayed on "safe" foods for a while, that her immune system would have calmed down again.

Sorry if this has made anyone nervous, that wasn't my intention, just wanted to illustrate the point.

Sorry I can't help directly....I had this problem with ds.....he reacted to egg at 9 months..threw up, covered in hives etc but due to no breathing difficulties they refused to prescribe epipens even though I begged!
Then at 13months ds went full blown anaphalactic after having a tsp of hummus (sesame). Luckily ambulance came quickly etc and he was ok after receiving treatment etc. I was then given epipens but it would have saved a stressful time if they had only given them to me before!!!
I think that part of the reason they don't prescribe them is because babies generally don't weigh all that much and the adrenaline in an epipen jnr is really aimed at bigger kids! I totally symapthise though as it is a nightmare....hope you get it sorted soon!

Wow Jammygal, that must have been very scary - and exactly what I fear. Glad all turned out okay.

Saw my GP today and ran it by her - she was also surprised that Epipen is available without a script, though said she had absolutely no problem with me getting one, that she totally understood why I might want one, and that not OTT at all. I honestly thought she would be against it.

Savoy and Thumbwitch, I think your posts illustrate perfectly just how different the opinions can be regarding allergies. Even the experts don't seem to agree, which is what makes it all so confusing.

Well, I think I've decided to get an Epipen - hope for the best and prepare for the worst, and all that. Though will be a bit more proactive than just hoping obviously.

Am off to read the NICE guidelines, as the whole to be/not be dairy free whilst BFing is another issue I've read/been told different things.
Thanks everyone for your input :)

I have a(nother) friend whose DC have multiple allergies (it seems to be more and more common these days) and she has to avoid the trigger foods while bf'ing or there are problems.

To be fair, mishtabel - it is a confusing subject - there is no definitive answer to:
why there is such an increase in allergies/intolerances
whether or not to avoid potential allergens in pg and early weaning
whether early avoidance increases the risk of allergy on introduction (personally I don't believe this, or no one would ever be able to eat new foods!)

But immunology has always been a complex subject with contradictions and different factions believing different things - when I did my masters, for example, they had just moved away from the idea that T suppressor white cells existed - they have now re-introduced them as a distinct subset of T cells.

Yes, I see what you are saying. In the whole BNursing course, we barely touched on immunology (that I can remember). I think they put it in the too hard basket TBH. Would love to know what their take on it will be in another 10 years from now.

I haven't thought that me having dairy has affected DD, though since weaning she has always had a constipation problem - it's only recently I have questioned whether the two may be related. GP wants me to continue having dairy until I see the specialist. Not sure what to do (that's my next dilemma )

Mishtabel. In your shoes I would want an epipen. That sounds like a pretty scary reaction to three drops of milk. On a similar basis we have an epipen.
If at all possible you need to see a specilaist though.

In terms of whether you should stop eating milk/dairy while bfing, our specilist recomended that there was no need if she wasn't reacting to my milk.

However I decided to give it a go as I guess I just wanted to feel as though I was doing something.

It wasn't as hard as I thought it would be (although I did lose weight- which I didn't mind!!) and it was a good chance to find dairy free alternatives and to 'practice' living dairy free.

I doubt they'll be saying it's any easier in 10 years time, mishtabel! one of the interesting things that is coming out now is that our gut bacterial genome might have a large impact on our own health - we rely quite heavily on our gut bacteria for several functions, including immune system regulation, so they're not to be ignored or taken lightly. And their genes outnumber ours massively (iirc, by a factor of 30 or so). But that's getting way beyond what you need to know for this discussion - just wanted to say that it's more likely to get MORE complicated, rather than less :)

DS's allergy specialist wouldn't prescribe an epipen until he was 15kg. I think your DC is too little.

Whelk, thanks for your post. I might give the dairy-free thing a go. If I knew the appointment with the specialist was soon, I'd wait for their opinion, though it could be months away, and I agree it would feel better to think I may actually doing something to help

Thumbwitch, out of curiosity I ended up googling about the bacteria you mentioned - fascinating stuff really. DD was quite sick when she was first born and within two hours of being born, she had been tube-fed formula (without my permission), then nothing for 3 days (bar IV glucose) at which point she was allowed expressed breast milk - can't help but wonder what that did to her poor little brand new gut! May or may not have contributed to her allergy, though I'm still sure she could have well done without it (the formula at 2 hours old!)

Trixymalixy, the weight issue did concern me, though childrens hospitals over her recommend weight to be between 10 - 20kg for junior epipen. I suppose their thinking would be that although it isn't an ideal dose, in cases of severe reaction, it's better than the alternative, which would be not having a dose. My DD is only 9.5kg, though my GP said this is unlikely to make a difference. Hopefully by the time I see the specialist, I'll beef her up to 10kg so as this won't be a point of concern for them

Thanks everyone :)

Where can you get them from ?

My son's lips puffed up after eating strawberries, and he used to get a rash from tomato juice on his cheeks. I am a bit nervous. I'm interested in how you can safely find out if they have an allergy. Do you rub it on their skin? So scary.

OnEdge - if you think your child has an allergy then you must go to your GP and ask for a referral to an allergy specialist, who can then do skin-prick tests or RAST tests for allergies to various foods/ allergens. Mention the tomato and strawberry so they can be included (although strawberry is in the top 10, iirc, of allergenic foods). Depending on how they react to the test, they will tell you the allergy "score" of each food/allergen.

To be fair, tomato juice is quite acidic, so he may have just got a rash from the acid in the juice, rather than it be an allergy - but still worth testing, especially for the strawberry.

Mistabel - My feeling is that my going dairy free probably didn't do anything but I did find it useful in giving me a trial run at finding dairy free snacks (where there is a will there is a way) such as Walkers crips, bourbon biscuits, plain mint chocolate.

Don't beat yourself up about your dd having formula. I exclusively bf-ed for over 6 months (dd1 has egg and other allergies so I wanted to do everything I could to avoid dd2 having them) and dd2 has milk and egg allergies. Interestingly she has never ever had an egg (or anything containing it) yet tested positive for it.

Oh and if you are going dairy free yourself and are breastfeeding, then really look at your calcium intake as it may well become depleted.

Mishtabel. I would agree about you having an epi-pen. I'm fairly new to this section as my DS 6 has only just developed allergies. His are unknown and last Nov had a reaction like your DD, but with very rapid breathing. His cons pead prescribed epi-pens on the basis that not knowing what your dealing with means you don't know if a bucketload treble the dose of puriton will work next time.

I was totally confused about it but the lovely ladies here really supported me and made me see the positives (iyswim!).

Whelk, mmm, bit undecided now about going dairy free. Tried rice milk last night (myself) and although I didn't mind it, my tummy has been upset all day today - might just be a coincidence, but has made me think twice.
I'm going to ring the specialist and ask them to give me a rough estimation of how long I'll have to wait for an appointment and take it from there. In the meantime, I'm going back through the old posts from here and getting loads of dairy-free snack/meal suggestions. Some of the things mentioned though, such as bourbon biscuits, I don't think are available here unfortunately. And there is a query whether DD is allergic to cocoa, so no chocolate ATM :(

Mumbar, good to hear your thoughts. I remember reading about your DS when I was going back through the posts, and again just recently when he got his epipen. Have you 'made friends' with it yet?

OnEdge, it is scary isn't it? I loved trying new foods with my other girls when they were little - seeing how they'd react to new tastes and textures - never giving a thought to allergies. Now my heart is in my throat with anything new - I hate it. I'm far too knew at this allergy thing to give any advice, and I'm from Australia anyway, so things may work slightly different over there. Either way, first port of call would be your GP, as Thumbwitch said (though I think Thumbwitch is in Oz too?). Just make sure you don't get fobbed off, like I did when I went to see a different GP when my usual one wasn't available. He just about laughed at me when I said my DD gets hives from even skin contact with dairy, told me that to have an allergic reaction you must ingest the allergen, and suggested I go and get some formula for DD as I should have stopped breastfeeding at 6 months . Luckily my usual GP is more understanding, and takes it a bit more seriously. Good luck