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any practical tips for new epipen user?

(8 Posts)
greencybermummy Thu 06-Mar-14 20:21:46

DD age 5 in yr 1 just been prescribed epipens as had severe anaphylactic reaction yesterday to as yet unknown food allergen.

So we've had training on ward today, got dvd and training pen, got pens and antihistamines to take to school tomorrow, got pens for home.

Have you any tips for what to keep pens and bottle of antihistamine in at home, how to remember it, how to trust friends parents on play dates etc.

She is having blood tests for various culprits but 8 weeks til we go back to discuss results.

Thankgoodnessforcheerios Thu 06-Mar-14 22:42:37

Hi Greencybermummy
Sorry to hear about your DD, that must have been so frightening.
My DS aged 2 and a 1/2 also has severe allergies and has epipens which we have never had to use yet touch wood, the antihistamines always seem to work quickly. It's all quite daunting when they hand over the training pack and your basically left to get on with it.

Myself and DP had a good old practice to make sure we felt confident and also showed close family and friends who may at some stage be alone with DS. I take the training pen out about once a month and familiarise myself with it and have another practice just so that hopefully I won't panic when I do need to use it.

We were also given an action plan which would need to be given to nursery when he starts however I look after him at home so have not experienced dealing with nursery/school with regards to allergies and what they will need. I did however notice with my son's epi pens that the label was on the box and not on the epi pen itself and most of the medical cases that you can buy to hold them would only fit the actual pen and you wouldn't want it in a box if you need to access it quickly. And school would obviously need clear labels/instructions.

There is also lots of information in the training pack, I went online and purchased a medical case (yellow and black)that holds 2 epi pens and a little bottle of antihistamine and a plastic spoon. At the moment it is always in the baby bag as I have an 11 month old DD as well and the baby bag automatically goes everywhere with us. If DS goes out on his own with DP or family it goes with him in his back pack with snacks, nappies etc. We have just got into the habit of saying keys, phone, wallet, epi pens!

I think you can also register then online so that they will let you know when they going to expire, I haven't done this yet.

With regards to trusting friends parents on playdates etc, quite simply I don't! My DS is severely allergic to egg, milk and nuts so I don't take any chances. If we are going to a friends for a party or play date I always bring his own treats that he can have and he doesn't seem to mind. Luckily he is quite wary of food because of reactions he has had in the past so he is not very keen on trying new things.

It's a shame you don't know what caused the reaction...but at least you have the epipen now.

spababe Fri 07-Mar-14 14:36:19

My son is 14 and has had epipens since 5. We have the little yellow bag as well. It holds 2 epipens and his inhaler (no spacer tho) and piriton tablets. It sits on the telephone table by the front door if he is at home. If he goes out on his own he can clip it to his belt which is a good reminder to his friends that it is there. The bag is about the size of a pencil case but the bright colour and the medical symbol on it make it easy to spot

spababe Fri 07-Mar-14 14:37:21

Oh yes don't trust anyone else with food. Either take your own or ask to see labels. Don't even think about eating anyone elses home made stuff (no labels to check)

spababe Fri 07-Mar-14 14:38:24

sorry forgot to say great helpful info for parents on Allergy Uk website and Anaphalaxysis website.
Also it took me about 4 weeks to get my head round it all and get over the shock.

chloesmumtoo Fri 07-Mar-14 16:29:07

Hi greencybermummy, I always found it easier to keep my dd's epipens etc in my handbag at all times. I know this may not suit all but with my dd being so young at the time she was always with me anyway. This way I always knew where they were and would not go anywhere without them! I kept the antihistamine in the smallest child saftey bottle you could buy from boots. I did also have a yellow cross bag for when she would go to her nannies alone or rarely a party, as it was a long time before I actually left her alone. School had a transparent lunch box with handle and I made a huge green cross on the front.
Now we do things a little differently. She is secondary school age and goes places alone. She has her own collection of bags to keep her things in dependant on what she needs. For school she has a Neoprene Epipen Pouch you can see on this website www.alwaysreadthelabel.info/page2.htm which clips to a ring I sew into her bag. She also has the badge pinned on saying epipen inside also sold on this site and the Emergency dose medicine bottle & syringe. The reason I love this medicine bottle for her now is because it is not child safe!! I want her to be able to get into it in an emergency herself which sometimes the child safe ones jam up and are problematic. So many things to think about. She also has the yellow cross bum bag which she wears over the shoulder but it is a bit large at the mo.
I second Thankgoodnessforcheerios about not trusting friends on play dates and to bring your own food items. We have had parents with all good intentions but no...............One parent swore blind to my dd, the cake was safe and she could eat it and thats why she bought it. I was very puzzled as I could not buy a nut free(from nut traces) cake any where at that time. Checked the label and it was a nut warning she saw not a nut safe symbol. Arhh. People mean well but be cautious.
She now wears a mecic alert necklace at times she goes out alone and always has a mobile phone. There is light at the end of the tunnel and they can grow up to be very independant and sensible. Good luck with everything

greencybermummy Fri 07-Mar-14 19:26:15

Thanks everyone, some good tips to think about/get our heads around. Much appreciated.

babybarrister Tue 11-Mar-14 12:24:22

Anaphylaxis Campaign has very good parents support groups - have a look on line

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