EPI PEN question for parents with SCHOOL AGE CHILDREN

[drosophila]

If you have an Epi Pen prescribed for your child how many do you get. DS's allergy consultant has always said that DS needs 4 (2 for school and 2 for home). The idea being that if one fails or if you use it incorrectly then you have a back up and if you are more than half an hour away from a Hosp you may need to administer 2 as one only buys you a half hour.

Anyway my GP is now refusing to prescribe 4 as they are so expensive and will only prescribe 2. I have phone Consultant's secretary to see if they will contact GP but I wondered if other Epi Pen holders have a view.

Thanks

[mell2]

Exactly - there are so few allergists in the uk. When i requested another 2 epipens, after being advised by the paed. allergist that we should have 4, the GP said "why do you need 4?"

I just feel that a lot of GPs do not know enough about allergies.

[sallyrosie]

The practice manager is an employee of the GP practice - most (not all) are run by the GP partners.
The PCT will have clinicians on their prescribing committees making these decisions and ultimately it all comes from the government -there just isn't enough money to go around!
Ask the consultant if they'll prescribe the epipens as a hospital outpatient prescription or as a hospital script - I'd guess they can't either for the same (cost) reason.
I do understand how frustrating it is - my daughter has an egg allergy and while she isn't at school yet she is in full time daycare. We managed with two but it did mean that we had to be really really careful not to forget them at the end of each day - not so easy when you have a primary school child who may be walking home on their own etc.
I just think it is too easy to say 'oh GPs are crap' There are a lot of decisions about medicines made in this country which ultimately are about rationing and it frustrates doctors as well as patients.

[drosophila]

Sallyroise I understand what you say but NHS direst website itself states that two maybe needed if a response is not seen after 5-10 mins of first dose. The thing is that I suspect the general ignorance of allergies amongst the medical profession in general means that even if there are clinicians on their prescribing committees they probably no bugger all about the treatment of allergies.

I will pay myself if I get no response to my letter and I know that the NHS does not have a bottomless pit when it comes to budgets but decisions are made and I ma trying to influence how they are made in my local PCT. I will contact my local MP as I know there have been some parliamentary reviews on allergy management (Internet is a great thing). I quite like my GP and I don't think she is crap at all.

[sallyrosie]

I think the point is that it says two may be needed - not four - so someone somewhere will be saying 'well, the child should always have two with them...' While it OBVIOUSLY makes sense to have two stored permanently at school as that is where a child spends vast majority of their time some people (who manage the money) may not see it that way. And they may well not have a child with a life threatening allergy either...
While I would agree that some health professionals may not be great at treating/diagnosing allergies and intolerances in general (certainly met some sceptics when my dd had cows milk intolerance when solely BF) anaphylaxis is a bit of a different scenario - I don't think this is an issue where people don't understand the importance of the adrenaline, I think it is purely 'you may need two, so you get two and you should keep them with you at all times and there is no money to pay for more regardless of how much sense it makes in practical terms'
I think you're right to raise this with the PCT etc, and the school could also raise it as part of their health and safety stuff. Nothing ever gets funded unless people speak out.

[tamum]

My ds is 11 and just started High School, so slightly different, but our advice was 3- one he keeps with him in his bag, one at school and one at home, so he is always within easy reach of a second dose. If you just can't get 4 that might be an option, if your child has a school bag?

[drosophila]

I have never had to use the Epi Pen the only person I know who actually used one injected herself and not the child in a panic. This was at my old nursery. Luckily they had the back up one. Even if the Consultant hadn't said each carer needs two this story would forever be in my head.

Anyway will let you know the outcome. Thing is I also asked for two bottles of Piriton and only got one with no explanation.

[sallyrosie]

Dunno - 3 sounds a good idea, but thought the point was to have two in same place so that if needs second one (if first one doesn't fire or is dropped or accidentally injected into someones hand...) it is right there to hand?

Just out of interest, what do you think of piriton? We have it as the 'standby' medicine for mild reactions but when dd developed urticaria it did nothing at all. GP suggested cetirizine (benadryl) and it works brilliantly as a daily dose to prevent it, stops poor little thing scratching herself to pieces. Had to argue with pharmacist though as apparently only recently licensed for under sixes...

[tamum]

No, their argument was that if there was no improvement after the first one you should try another, but as an ambulance would also have been called you would be covered. I never thought of an accident happening at the very moment you need the pen

[missymoosal]

Decided I didn't like my name and have change origionally toofatmum. I am an A+E nurse so I see the results of serious allergic reactions all the time. The BNF that I quoted from has a web site www.BNF.org. You must register to gain access to the specific drug information but if you explain why you want it there should be no problem. If you can't access it let me know and I can photocopy it and post it to you> My email is [email protected]

[drosophila]

Piriton always works for us. Once we were given a different strange name one as DS was going to a farm and we know he has some animal allergies so as a precaution we were given a long lasting one with a Greek Name and I think you could give Piriton on top.

hen was a child I had urticaria every summer real bad and our doc never gave us anything. Can't believe it now!!! I still can get it if I eat too much acidic fruit.

[drosophila]

Missy thanks for that.

[ke127106uk]

check out our new site with particular regard to school food and allergic kids.

www.freewebs.com/allergynetwork

Ke.

[christie1]

I have 4. I think it was mentioned, but there are new epipens out now that come in packs of 2. I heard a doctor recently on the radio who advised always carry at least 2 as one is only good for 30 minutes. I send my dd to school with 2 in her fannypack which the teachers know about. I also leave one with the school office. I carry 2 myself always in my purse. They expire yearly so you could stagger them, get 2 then go back 6 months later and get 2 more. But I would stick to my guns and insist on 4. YOu need them.

[christie1]

just read this, so I have 5 epipens.

[Gingerbear]

a bit of a hijack, but there is a pupil in DD's reception class that has an epipen for nut and raw egg allergy. The teacher has sent a note requesting that parents ensure that food sent to school contains no nut traces. Is there an easy way to check? I presume avoiding stuff 'produced in a bakery containing nuts' or suchlike would be a clue - but the local bakers make seeded loaves - is sesame seeds likely to cause a reaction too?
I will probably stick with hovis to be on the safe side.

[ghosty]

Haven't read other posts ... but used to teach a boy who needed an epi pen ... we had 2 at school. One in my desk (I had to go on a course on how to use it) and one in the sick bay.

[threebob]

I don't know anyone here (NZ) who even has 2 let alone 4. We pay $120 each for them as they are not funded by the government.

The school age children hand the pen in each day to the teacher (or carry it themselves in a special pouch thingie) and take it home each night.

[ke127106uk]

I have 2 per set ie. two for DD, two sets for school - it's a big secondary school with two buildings quite a distance apart. Two at home, two in my bag/car and each grandparent has 2 - that's a lot of Epipens but, it does mean that she's likely to have easy access whatever happens.

I make up emergency kits in plastic boxes, 2 EP's, a Ventolin inhaler and a supply of her antihistamines. Marked on top of box with a big red cross and her name and my contact number.

This works a treat.

[mell2]

Ke, how do you get so many epipens? Are they all on prescription or do you have to pay? I did manage to get 4 new ones this week for my ds but the gp did try and get away with writing a prescription for 3 at first!

[christie1]

I should have said I am in canada and pay for mine (have a health plan that helps) but I feel it is money well spent as this is life saving stuff for my dd. on the staying nut free, most snacks and things are labelled well. on home baking, just don't use nuts/almond flavouring/peanuts or peanut butter in recipes. Dont' use butter that someone might have dipped a knife containg peanut butter in. That is all you can do. sesame seeds are not same as a nut allergy. It sounds like the child doesn't have that allergy. You could ask the teacher to be safe if your not sure. my dd does have sesame seed and nuts but it is not common.

[tatt]

we have 4 epipens - two that travel with the child (in theory, although you can't rely on them taking them from the bag to the canteen), one stored with the school first aid kit and one in my handbag. The one at school is in a green plastic box I found marked with a large cross. It contains a small bottle of antihistamine, the epipen, a cork (to put on the end of a used needle) and instructions taped to the inside of the lid. We used to have two at school when it was a small primary but at a large secondary they need to have the pens with them. Unfortunately saying it is one thing, getting the child to do it another!

We've had comments about cost before now and I made a complaint to the gp. renewal coming up soon so I hope I don't get them this time. Pens cost the NHS here about £30 a time, not too much to save a life.

[Julia76]

Hi my son's consultant also told me that we should have 2 for home and 2 for school, however i have had trouble myself from my GP regarding the same problem. I usually have to make a point in specifically reminding the doctor or receptonist that he must have 2 for home and 2 for school and usually then ther are no questions asked and er recieve the right amount needed. I suggest you be persistant, this is the only way.