Epipen: transition to not being with an adult all the time

[wonderwoo]

My son carries an EpiPen. Up until now, its fine, because he always has an adult with him. However, he is getting to an age where at some point soonish, he will be out and about on his own, or with friends, but not having an adult with him.

I have already started getting him used to taking responsibility for carrying his medi kit, and for always remembering to have it on him. He has been trained in how to use the pen and has practised with out of date ones. This is all fine, he is a sensible boy and he understands what he needs to do.

However, whilst he can do all this, it is very different to actually recognising when he is having an anaphylaxis before his consciousness level drops too low to be able to use the epipen. And also its very different to actually being able to make the decision to use it and then to jab himself with it. I think there needs to be a level of maturity there that is really quite a few years away yet.

But if he didn't need an EpiPen I would be letting him take short walks by himself before too long, building up to being out with his mates etc. I don't want his allergies to hold him back from that kind of normal independence.

So, what I am asking, is how do you transition to the point where a child can be independent with using their EpiPen if needed? And what if they are mature enough for a bit of independence, but not mature enough to cope with self-administration? (I am not talking about carrying it and eating carefully, but actually the act of using it if needed).

My son has had a number of anaphylaxis now, so this is not just a theoretical risk. There is every chance he will have another and I need to know he is safe. But I cannot keep him in the care of an adult permanently! Please help - your stories and advice will be appreciated.

Anyone?

Is he willing to talk about this with a sensible friend or two? Is that possible? So that they know what to do, or what he needs to do if necessary? I have no experience of this so don't know if it's realistic, sorry.

I will be where you are in a few years and it fills me with dread! I hope someone who has been through it will come along soon and offer helpful advice...

My d's is heading to secondary soon so this is looming for us. He doesn't have too many allergies and we've never used the epi-pen yet but I'm still terrified about his older teenage years.

Hi meg and this. Hopefully someone will be able to pass on some advice soon.

Thanks patch. I will be training up his friends. But its a lot to expect of them until they are adults. I will get him a medi bracelet to wear (if he agrees to wear it) for times when he is out alone, but it's not enough. It scares me.

Would you feel better if you put instructions for administering the epipen in the pouch along with it?,
They're designed to be fairly fool-proof, I believe...

I have just found this article. Is a bit of help.
www.apathtonaturalhealth.com/blog/food-allergies-what-is-the-right-age-for-epi-pen-independence

Epipens have the instructions printed on them. They are designed to be easy to use.

I have a severe nut allergy. I remember being 9 and knowing immediately on eating a sweet that I was reacting so I think if your son knows to err on the side of caution the minute he thinks he might have an itchy mouth or swollen lip and to use the EpiPen then that judgment side of things should come soon enough.

I always stuck to buying/eating sweets I was familiar with when out with friends at a young age. I think I was about 13 when I taught friends how to use the EpiPen because we'd started to go to cafes etc.

I think that even if you can just teach his friends that in the event of a reaction that they phone an ambulance then shout or run and find the nearest adult to help, as long as everyone knows where to find the EpiPen that should be quick enough as many adults will be able to operate the EpiPen.

I've been lucky that even with my most serious reaction I've always had time to do the epipen myself before I become incapable.

In my limited experience- working in schools, rather than looking after a family member, in the early years of secondary school, you could divide kids with potentially anaphylactic allergies into two groups.

Group 1, fairly laid back, - kids who naturally mentiontioned carrying an EpiPen to their friends, had conversations about why, and therefore, without trying to make other kids responsible, were likely to be noticed and given help if they were suddenly unwell.

Group 2 - mostly boys - were acutely embarrassed about being ' different', tended to keep their allergy and EpiPen a secret, and therefore would rather pretend that there was no problem than ask for help, or ,for instance, admit that they'd left EpiPen at home, and needed to do something about it.

So which is your DS likely to be?
Group 1 is so much safer, and having an easier time. They've accepted this is how their life is, own that they themselves have to take responsibility, and don't feel any need for secrets or embarrassment.

How do you help DS become more like this?
Cooling the emotional temperature around the issue- it's not a huge deal, and they need to become confident they know how to manage it.( Yes, I know, easy for me to say- I haven't feared my child going into anaphylaxis).
Chill, teach him to manage, show him you're confident in him.
Then he's less likely to keep it a secret.

When he's reacted in the past, has he recognised that he's reacting? He needs to know his symptoms, so if he hasn't recognised them before, you need to teach him what they are. Most people with severe allergies know very quickly when something is wrong (lips tingle/swelling/mouth burns/breathing gets hard/racing pulse/any combination of the above), then it's a matter of reacting.

I'll be very honest, making the decision to use my epi-pen on myself the first time was hard. what helped was my GP's voice in my head telling me better an overreaction than an under-reaction. At boarding school, Matron was very clear about there being no messing around - if I didn't have my kit, I wouldn't have been allowed out of the building during free time.

Clearly labelled emergency kit, notes if needed and get him a medical alert chain or bracelet...then hope for best having prepared him the best way you can.

On the medic alert bracelet front, they do sportsband style medical bracelets so that it needn't look like a 'girly' piece of jewellery.

I think having the medic alert tag is really useful. Mine is a conversation opener when I meet new people which is useful as it means people ask why I'm wearing it and I can brief them on why and what to do if I were to eat nuts.

INeedNewShoes

Take a look here, so many styles to choose from and with some of them (maybe all) you can also add an ICE number.

www.theidbandco.com/Medical-Bracelets

Thank you so much everyone for all your experience and advice. I really do appreciate it, and it helps to give me a vision of what the future will be like, as well as some practical steps to take. I especially appreciate the insight from those of you with allergies yourself. It is reassuring.

I am normally pretty laid-back to be honest. Not the type to sit and worry about things like this. I think the problem is that with past severe reactions, he hasn't told anyone about his symptoms, and so I am worried that he will have a reaction and not tell anyone. I think some of it was that he was too young and didn't understand, and some of it is fear of having the EpiPen. But often, and this is what worries me, part of his reaction is a slight drop in consciousness, so that he goes very still and quiet. This happens very quickly. He doesn't pass out at that point, but he is not quite with us either, and I don't think he is able to do anything at that point.

I will definitely get him a medi bracelet and will start briefing his friends on what to do if he gets ill. I am not worried about the actual using of the pen, as it does have instructions on it, its more the using it quickly enough that bothers me.

He is definitely the sensible type Perma and is not (yet) embarrassed about the whole thing. I am very lucky that he is able to discuss it openly and to understand it fairly well.

Thank you again