parents of children who carry epi-pens, are you anxious about their allergies?

[Meglet]

Because I've been told I'm worrying too much because DS has allergies.

For me, it does mean have to think about playdates / parties / meals out that bit more carefully. And TBH I have to make a judgement call on whether other people really understand how to deal with them, if I don't think another adult has grasped it (or would be too busy to potentially notice a problem) then I stay at parties, although outside, just in case.

I don't see how I could be totally chilled out with a child who might need an epi-pen . I'm used to it, but I still worry. I'm sure if I said it was a doddle and never fussed then I'd be accused of not giving a damn .

Who says you worry too much? Do they have children with epipens? You need to do what you feel confident and comfortable with. I am always making a judgement call about who can/cannot be responsible for epipens etc. If you didn't worry you'd be called uncaring and feckless. So hard to get it just right.
I'm teaching my DD to tell people about her allergies and to check what's in things. This will be a gradual process as she gets older and begins to take more responsibility.
How old is your DS?

My mother didn't give a damn and I spent a fair bit of time in ICU as a result (not that she ever bothered to visit me there either once her beloved twins were born but that's another matter).

There's a huge difference between respecting your dc's allergy and fussing needlessly, precisely where that line sits depends on the allergy and how it is triggered (ingestion only versus contact and/or inhalation as well).

To me it sounds as if you're getting it broadly right, you're not isolating your dc, but you are trying to ensure there is a safety net in place. Being perfectly honest; if you've never had a serious allergy you haven't got a clue what it's like to live with it, if you've never parented a child with a serious allergy you have no idea how difficult it is to manage the life versus staying alive balance.

Keep doing what you're doing

Thanks

greency it was from a psychiatrist as part of my ASD assessment. Really critical of me .

DS goes out for meals, with family as well as with me. He goes to parties and to Beavers. I worry, but it's constantly there and being a LP it's all on my shoulders.

Oh, DS is 7.

Never had anaphylactic shock so far. There's been a couple of times he's been served something with pine nuts in and I've swooped to stop him eating it. That really would be a trip to A&E.

Hanging around at parties where the parents may not notice a problem seems reasonable.
Do you hang around outside school or Beavers?

Ha! God no! And he has school dinners.

Yes I am anxious. But I was just as anxious before we were prescribed the epipens. Dd's allergies have changed the type of parent I am - I have become more risk averse even when it isn't food related

I have considered counselling for it because it really affects me. I don't think I am alone in feeling this way either btw and I am more than happy to stand outside parties/clubs if it means keeping her safe.

Meglet sorry to hear the psychiatrist was so critical, how mean. Could you access any counselling to discuss the anxieties about your DC? I've not tried the anaphylaxis campaign helpline but have heard they are very good. May be useful to give them a call to discuss.

Clearly your psychiatrist doesn't have a child with a life-threatening condition! Of course you're bloody anxious! It's so hard to get the balance right between keeping your child safe and being totally over-the-top and not letting them do anything. I try really hard to make sure my DS has a 'normal' life but due to his multiple life-threatening allergies this just isn't always possible. Play dates or parties without me are virtually impossible even though he's now 7 as there are so few parents who would be willing to be epi-pen trained (and that I'd trust to be able to spot the signs). Eating out is very limited and we stick to a small number of restaurants that we trust. Activities out of school also involve one of us staying with him as they don't have the capacity to monitor him closely for reactions and don't generally have epi-pen training either. I don't think that makes me over-anxious, I think it makes me prudent and realistic. I would love to be able to leave my child at parties etc but it simply isn't an option. Believe me, you sound far less over cautious than a lot of the parents of allergic children I've come across over the years! I often think it's a wonder that any of us manage to stay sane.

I think that my dd generally has a normal life right now but she is only 4 so it isn't uncommon for parents to hang around at parties etc still. To be honest I am the kind of mum that would stay anyway but everyone is different. Agree with freefrom that your psychiatrist clearly doesn't understand. No one can possibly understand how you feel except others in the same situation.

I wonder if OP's psychiatrist is buying into the 'epidemic of self diagnosis' rubbish, the crappy fall out from which makes the lives of genuinely allergic people 10x more dangerous than they need to be?

I've certainly noticed an increase in suspicion when I inform people of my allergy (ok, I accept that mine's a bit unusual because it's not a well known issue but that's not the point), it got a lot worse when 'allergies' and 'intolerance' appeared to become trendy.

The bottom line is that you can only 'normalise' life so far when a family member is severely allergic, precautions have to be taken and unfortunately that will always have an impact on life in general.

freefrommum - have you started teaching your DS how to recognise an allergic reaction and how to administer his epi pen yet? My Father was much more at ease once he knew that I could take steps myself and was not reliant on my could-not-give-a-toss Mother.

I think it is normal to be anxious about a severely allergic child - I try to keep relaxed about it (DS4) by ensuring we take all reasonable precautions to keep him safe, and have his medical bag on hand at all times so if he does react unexpectedly we are prepared for it. There is not a lot else you can do! We have been careful to be calm with him about his allergies so he doesn't get anxious himself - we are most worried about him not being confident with eating - thankfully he is, and is very aware of his allergies and is confident we do our best to keep him safe.

I'm massively anxious! and we don't even have the epipen yet.

DS2 has spent most of the last 48h in and out of hospital with a diagnosis of "anaphylaxis - unknown trigger" and was discharged today with adrenaline "just in case", having had 2 doses in ED which improved things.

It's the first time I've had to deal with this sort of thing in my children; I am anaphylactic to peanuts so am used to dealing with it for myself though.

Given we don't know what caused DS2's reaction, we don't know what to avoid. I've not changed anything in his environment so we will carry on as we were but with an added level of vigilance - first sign of that rash and we'll be straight to ED. Which means one of us hanging around at parties, at play dates (unless I warn the parents) - we also have to warn the school.

Having spent a sleepless night with him and now working out his steroid and antihistamine regime, I don't see how any parent of a child with serious allergies could be anything other than anxious about it.

Of course you will be anxious, you have every right to be, your child could stop breathing. I was - for eight long years until we went on a clinical trial which means we no longer need one.

Absolutely ridiculous to suggest anything otherwise. The wife of a guy I worked with was a GP, their son had an epi-pen, we were comparing notes one day - moaning about how hard international travel was with severe allergies when you didn't speak the native language terribly well.

Guess what, they never travelled abroad and whenever they travelled they researched the nearest hospitals with A & E departments. Made me feel much better about things as people who don't understand often think you are OTT.

How horrible that your psychiatrist is so unhelpful and obviously has no idea what it is like to have a child with severe allergies.

You are going to be anxious, but it is controllable. Make sure that your child knows exactly what they can and can't eat. Teach them a polite but firm phrase to say to teachers/adults that explains the allergy without sounding cheeky. Above all, your child must know from an early age to be wary. Teach them to give themselves the epi-pen and make sure all siblings know how to as well.

With luck, your child's allergies will be stable, but a medalert bracelet or necklace is a great thing and you get really funky ones now. My DD is now 23 and lives 500 miles from me. We've had the odd scare, but she learned very early on to be ultra-careful. Boring, but it becomes a part of your life.

I think it gets easier when they are older to be honest. My daughter was very sensible but at some point you can't completely allow a 4-5-6-7 year old to be responsible for their own safety.

She knew never to eat anything not given to her by parents/teachers/approved friends and family but sadly many people do not understand or are ignorant.

Like the woman who was insisting that she take a handful of chocolate buttons in the dressing room at the Christmas ballet show - insisting despite her refusing, because at 6 she couldn't possibly not want chocolate, even though said chocolate would have resulted in a 999 call.

Of course you learn to manage, but anxiety to some degree is completely normal when you don't know the people you are trusting with your child.

The psychiatrist is a person and thus not always right. They probably have a limited idea about allergies and have never had to deal with the social repercussions that go with an allergic child. I've always taken my son's own food to kids parties/play dates and often had to stay at clubs as the club leaders have refused to accept responsibility for the epi-pens and asked me to stay. I went to epi-pen training at school once (as a refresher for myself) and watched both my son's form teacher and the first aider administer the trial epi-pen incorrectly straight after being trained. I can't stay at school, of course, but can only check and remind on occasions. We have kept my son safe through being very careful. I would never forgive myself if my negligence meant he came to harm. As he has got older, he has taken on that responsibility for himself. If there is unexpected food at a club or he is unsure about what is being offered then he declines the food even if it is something considered a 'treat'. None of this is easy for him or us but being healthy and well is the most important thing. Stick to your guns.

Have you seen the templates for letters for your child's teacher and other parents in your child's class on the Allergy Adventures website? They look like a good idea to help raise awareness with classmates parents and teacher.

This popped up in active convo's and I thought I recognised it .

Thanks for all the replies, I thought I was going mad when I saw the ASD report. I'm going to back to see them next month, and I'll be insisting that part is taken out. I may have anxiety but I don't think my worries about DS's allergies are out of proportion.

DS is 7 (almost 8) and he is very good at not eating any old food that is passed to him in a strange place. I'm always on the ball but he's learning to keep an eye on things too.