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Children carrying epipens

(29 Posts)
tjbhrj Sun 30-Mar-14 14:47:38

Hi all,

DS (11) has had an epipen since he was about 15 months old, and up to now its always been carried by an adult/held in the office at school. The time has come for him to start carrying his own pen sometimes- he's getting older, and I know I'm too overprotective with his allergies, and things need to change...
Anyway, I was wondering if anyone with older children had any tips making the transition to more independence. Does anyone use special epipen holders - preferably one which can be worn on the body? DS is very disorganised, and I'm worried he'll lose his pen if I just give it to him to put in his bag - and it's also likely to fall out of trouser pockets etc. How do those of you with young teenagers cope with this?

Many thanks for your ideas,
TJ

babybarrister Sun 30-Mar-14 15:47:10

DS been carrying his own in a bum bag since age of 5! Anaphylaxis Campaign presently looking at design ideas for boys to carry epipens as obviously they do not carry handbags in the evening .... Other option is a leg holder thing which Ionce saw advertised - goes under trousers ....

What I have done though is made sure that school also have a set of pens - Anaphylaxis Campaign also campaigning for schools to keep generic epipens on site as happens in US Canada etc

ggirl Sun 30-Mar-14 15:51:10

interested in same thing
ds also 11 and starting senior school in sept
he's going to take it in his backpack
refuses to use a bum bag type thing
he needs to carry inhaler and spacer as well

eragon Sun 30-Mar-14 16:03:20

my son used a black pencil case to hold the all meds, and this transferred from school back pack to small nike back pac for weekends and out of school.

However he has been carrying his own for yrs before this so was used to doing this.

We put a hook by front door and explained it was his responsibility to remember.
we have a motto, no epi no eat. and stuck by it.

does he wear a medic alert? this was the age my son rebelled and only now at 18 have we got that sorted.

do you have a trainer pen, does he know how to use it, does he practice with out of date pens on oranges?

what else have you done to give him steps to independence with his allergies?

eragon Sun 30-Mar-14 16:05:58

oh, and its worth making sure his school bag is clearly identified so that if he needs his epi pen he can describe his bag to others to get it for him.

we used a selection of key rings of his choosing, on the bag strap.

ggirl Sun 30-Mar-14 16:07:25

ds used to wear allergy bracelet , stopped wearing it when he was around 8 as he grew out of it and refused to wear another one
I am trying to get him to wear one again as he's reluctant to talk about his allergies to friends etc and I think this would force the issue and help him be more comfortable talking to people about it.

babybarrister Sun 30-Mar-14 16:24:55

Anaphylaxis campaign have special workshops for teens and their parents .....!

tjbhrj Sun 30-Mar-14 18:27:11

Thanks for all the ideas. Honestly, there's a lot we need to do. Although DS is perfectly capable of cooking (simple stuff), cleaning (not particularly thoroughly, but still), can put on laundry etc I'm very overprotective with allergies, and haven't really begun to get him to take responsibility.

When we go to restaurants he is expected to tell the staff about his allergy, and he also checks the allergy information (with us double checking) in those allergy tables you get in chain restaurants.

I've only left him home alone twice (for about 15mins, and with strict instructions not to eat - he didn't), in case anything happens whilst I'm out.

I need to teach him to use a pen (we have trainer pens - epipen and jext), so I really need to sort myself out, and expect him to take responsibility. It's so nerve wracking though. I know he'll lose the pen at some point (he loses everything else), I just have to let him learn the hard way, don't I....
Oh well (gives self kick up the bum)

tjbhrj Sun 30-Mar-14 18:30:06

Realised I missed a question - sorry.

No, he doesn't have a medic-alert band - mainly because I haven't really left him alone/with friends - he's always with teachers/adults. We are members of medic-alert though - I keep the card with his details with his epi-pen so if he ever had a reaction whilst in the care of friends/at school paramedics can access his medical details quickly. I'll look into the bands

cello999 Sun 30-Mar-14 23:34:24

Hi.
My child is also extremly disorganized. Most of this has already been said but keep a set at the school, one in a front pocket of a school bag(make sure he doesnt know its there) and give one to him to keep. That seemed to work for us! Good Luck!

DameDiazepamTheDramaQueen Mon 31-Mar-14 19:23:37

Ds had been carrying his since he was 5 in his school bag, one is also kept in the school office.

We have a case from the yellow cross-Bear Gryls Carries one for bee stings, so it's coolwink

We also have a small bag from sport's direct which is just big enough for the pens and ds wears it across his body when he goes to the park etc.

chloesmumtoo Tue 01-Apr-14 20:58:08

Hi tjbhrj, dd started secondary in Sept and has to carry her own medical items. We solved it by buying a Neoprene Epipen PLUS pouch from www.alwaysreadthelabel.info/page2.htm It's great as it has a clip to attach to a bag or belt. I sew a key ring inside her bag for it to clip too so it is always hanging at the very top of her bag and fixed in so it can't drop out- but can be unclipped easily to take down to the field for P.E. ect. We have the 'epipen inside' badge on it from the same website . We also bought their 'Emergency dose medicine bottle & syringe'. As it has not got a child safe top which makes it easier to open in an emergency with the correct measured dose of piriton inside so it can be drank straight from the bottle. Dd varies how she carries her items due to what situations as we also have the yellow cross bum bag which she wears over her shoulder for orrienteering or parades ect. This has been very useful also. Dd got her medic alert necklace around the same time as starting secondary school so I can let her go out with other children to give her her freedom with the knowledge that in an emergency all the info is to hand. This gave me the ability to let go along with her having a mobile phone!

chloesmumtoo Tue 01-Apr-14 22:19:08

Forgot to mention, dd can just manage to fit in the plus pouch 1x epipen (as one is also in school office) areo chamber plus, ventolin and the small medicine bottle. No more will fit in (pretty tight) but it's ideal for school purpose. If she uses it at other times she will put in two epipens and uses it for inside a small ruck sack with the areo chamber packed separate. As for the yellow cross bum bag, we have, with careful packing, fitted in everything mentioned with the extra epipen but it is like a jig saw puzzle to fit it all in!

ggirl Tue 01-Apr-14 23:14:32

thanks for the link to that site, I may order one of those for ds.

noticed a link to a daily mail article about a childs death due to anaphylaxis recently.

Would you show your child this article to impress on them the importance or do you think it would be too scary/upsetting

Poor child in article wasn't diagnosed so no epipen .here

tjbhrj Wed 02-Apr-14 11:20:13

Thanks everyone for all the replies and ideas - they are great.
Chloesmum - I'll check out that site, I like the idea of clipping a pouch to his bag so it can't fall out/can easily be found in a hurry- I do the same with my keys in my handbag, so don't know why I didn't think of it for an epipen.
Ggirl we have talked about deaths from anaphylaxis, and I have shown him a story when a teenager wasn't carrying his pen and died from a reaction. Scary stuff, but he has to understand the seriousness of the condition...
Lots of posters have said that school keep a pen as well as the child - that makes sense, I may have to convince our GP, as they're very stingy with epipens, but I'll sort it...
I left him in the house by himself today for 50 mins - longest I've ever left him. Strict instructions not to eat anything except drink of water, and get on with some music practice. I phoned him half way through, - he was fine!

DameDiazepamTheDramaQueen Wed 02-Apr-14 11:41:04

Your GP should prescribe 4 epi pens as 2 should be carried together in case one is not enough, so 2 for home and 2 for school.

Leave food out for him that is 'safe' next time you go out so he isn't tempted to help himself.

Does he read packets/labels on food? Does he know the name of all nuts for example my ds didn't know that an almond was a nut - so we go through the names so he knows for future.

By this age he really needs to be taking responsibility for himself a lot of the time so although its scary you need to loosen the reigns a bit and let him deal with things while you gently remind.

It's hard and scary. Im having panic attacks about ds's new girlfriend eating nuts and then them kissing <gulp!> All you can do is advise and remind x

babybarrister Wed 02-Apr-14 13:23:53

The Anaphylaxos Campaign certainly supports all sufferers carrying 2 epipens on them at all times

DameDiazepamTheDramaQueen Wed 02-Apr-14 13:34:18

Thanks for that link up thread, Im going to order ds a weekend bag for his dpi pens and inhaler, really good price too!

tjbhrj Wed 02-Apr-14 15:06:41

Dame diazepam &babybarrister
I know - believe me. I go prepared for battle every time his repeat prescriptions are due for renewal...

Dame diazepam - LOL about the girlfriend thing. We're a few years away from that yet, but that worry has crossed my mind...

I've started a getting him to check food, then I double check too. Labelling is changing at the moment, just to make things more complicated, but at least once this transition period is over every manufacturer will be the same.

Food in the house - we don't generally have stuff which he can't eat. Occasionally I'll have some pralines in the house, but I always point them out to him, so he knows not to help himself (he's good like that :-)

Off topic, but on the positive side, we've made huge leaps forward with his egg allergy in the last few weeks. !!! He's been eating cake since he was 4, and gradually we were able to add in other cooked egg containing foods such as pasta, pancakes etc. He was still getting an itchy mouth when he had Mayo or foods which contained a lot of egg like meringue. Anyway over the last few weeks we've been trialling these foods again after his consultant suggested giving it another go. Quiche - fine ( and he liked it, which is a miracle), Creme eggs - fine, mayo in a sandwich - fine, and finally this afternoon meringue - fine. I haven't tried whole egg like scrambled egg or omelette yet... So watch this space. But I'm still very happy about these steps forward.
He has also started hayfever desensitisation injections this year (pollinex), so we're hoping for a better summer...

So that just leaves the nuts and the oral allergy syndrome (kiwi) to worry about then...

DameDiazepamTheDramaQueen Wed 02-Apr-14 15:50:02

Sorry, hate to break it to you but my ds is 12, only a year older than yours. You're kidding yourself if you think it's a few years off - be prepared!

I take a copy of the consultant's care plan to the GP regarding dpi pens as it clearly states on there that two pens have to be carried. They can't argue with that.

Very interested to hear about the hay fever injections, we have miserable summers here, last year was horrendous sad

tjbhrj Wed 02-Apr-14 16:04:10

Argh! Really? I was imagining he was at least 15 :D. My son is so not into girls at the moment, but I suspect senior school might change that...

Pollen injections - Ds has had pollinex, for grass pollen allergy (it's also available for tree pollen allergy) To get this on the NHS, his consultant wanted ds to have 2 summers when his hayfever wasn't controlled by "normal"treatments. DS was taking loratadine, nasal spray etc, and yet would get wheezy, so had to be given a salbutamol inhaler (he's not asthmatic) 2012 was particularly bad, he needed a couple of days off school his hayfever was so awful he could hardly breathe. The treatment is 6 injections one week apart in Jan/early Feb, for 3 years. We've only done year one so far, but we're hoping for some improvement this year. If you look at pollinex.com there's quite a lot of information about this treatment, including where it's available (not sure where you are). There's another treatment called grazax, which is a tablet, and I think that's taken everyday for 3 years, but you can google that too. Grazax isn't funded in our county, so pollinex was our only option on the NHS.

DameDiazepamTheDramaQueen Wed 02-Apr-14 16:19:44

Nope, my ds isn't into girls either… or so I thought! It was such a shock I thought we had YEARS ahead of us. I had to lie down in a darkened room to recover I'm not joking

Thanks for the info, sounds like ds's would have to be much worse than it is currently. It triggers his asthma, its a real PITA.

tjbhrj Wed 02-Apr-14 16:21:12

Triggering asthma might be enough - you could ask, they can only say no...

DameDiazepamTheDramaQueen Wed 02-Apr-14 16:31:21

Very true -I will mention it next visit.

babybarrister Wed 02-Apr-14 17:27:05

Oh god, does this mean I only have 5 years left till DS starts snogging people!!!

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