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 Post subject: How many epipens?
PostPosted: Sat Oct 27, 2012 6:57 pm 
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Joined: Sat Mar 06, 2010 11:39 pm
Posts: 2080
Apologies if this turns out to be a long post.

DS has a severe nut allergy. He has always had 4 epipens - 2 for school and 2 for home - as recommended by the hospital, but the doctors at our local surgery have always questioned this. Every year, they kick up a fuss and every year they eventually agree to the 4 epipens.

One stays at school with Matron and DS carries one around with him. He takes the one that Matron has if he goes on a school trip. This leaves us with 2 at home.

Four years ago, the consultant at the hospital told us that his allergy was so severe that there would be no point in seeing him for at least 5 years. They were going to discharge him and he would have to be referred again at a later date (not sure by whom).

This year, our local doctors are being rather more difficult than usual. They have given us just 2 epipens. This means that now we are one short. We need at least 3 to ensure he has access to 2 pens at all times. I asked the doctor what we are supposed to do if he has a reaction at home. The doctor was unable to give me a satisfactory answer. They have a copy of the letter from the hospital stating that his condition is unlikely to change, but she says there is nothing in his records to say that he is entitled to more than 2 pens. Apparently, another doctor will be ringing me on Monday.

Can they refuse to give him a 3rd pen? I know budgets are tight, but he really does need 3 to be safe. I'm also amazed that after 10 years their records aren't accurate.


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 7:24 pm 
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Joined: Fri Sep 15, 2006 8:51 am
Posts: 8113
depends how many doses of adrenaline you are intending to give in the event of an allergic reaction.


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 7:31 pm 
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Joined: Sat Mar 06, 2010 11:39 pm
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Hi HM. His treatment plan says that if there is no improvement within 5-10 mins he should be given a 2nd one. So he always needs to have access to two pens.

A friend has just suggested that I buy a 3rd one for now, which I will do. I just wish they could get their act together.


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 7:32 pm 
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Joined: Sun Apr 22, 2012 11:49 am
Posts: 117
Location: North Lincolnshire
Hi

I'm totally with you on this as my youngest son to has a severe nut allergy. Please persist with this issue with your dr. My son get 3 dual packs so I have a pack of 2 that go everywhere with us. He then has another twin pack in his reception class that is easily accessible to all staff in there and the 3rd twin pack is held in the medication/welfare room at his school in case of a reaction incurring whilst in another area of the school. I dud question initially but insisted that if I did not get what we needed then I would take the matter further if anything was ever to happen. His consultant at the hospital supported this as his reaction is so severe and he sent district nurses into his school and about 35 staff are regularly trained in administering epi-pens.
The school have been amazing and have photos on the wall near fire safety info and any new person who enters his class must read his management plan just in case.
Really hope you get these essential life saving injections.

Good luck :D

Angie76


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 7:36 pm 
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Joined: Sun Apr 22, 2012 11:49 am
Posts: 117
Location: North Lincolnshire
It's essential to have 2 epi-pens at all times as 1 may not be sufficient and if an ambulance has not arrived there may be a need to administer a second after 5-10 mins if they are not breathing.
It's an awful experience watching your child in this state. Something my son has gone through twice. It really is life or death so please please don't let it drop.
Medicalert UK are a good support also and my son has a special bracelet which detailed his problem x

Angie76 :D


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 7:38 pm 
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Joined: Fri Sep 15, 2006 8:51 am
Posts: 8113
hmm appreciate the problem :wink: and suppose it depends how far you are from help (I work in a practice where it takes 45 mins to get a 999 ambulance)


Reckon 2 shots is OK provided help is on its way :oops: - doctors tend to get the heeby jeebys if they think that adrenaline is given and no one calls an ambulance ...

- Am sure I have done more than 2 on prescription for some kids, though I did query it until it was explained to me by the parents :? Also can be a problem if the thing doesn't work properly


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 7:45 pm 
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Joined: Sat Mar 06, 2010 11:39 pm
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Your poor son (and poor you, too).

I think we've been lucky so far - just one nasty reaction.


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 7:48 pm 
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Joined: Sun Apr 22, 2012 11:49 am
Posts: 117
Location: North Lincolnshire
Yes our sons management plan states that we must phone an ambulance ASAP which I can't imagine anyone witnessing anaphylactic shock not phoning.
Definitely not something I wish to witness too often.
Consultant said it's safe to give the 2 doses if patient still has breathing difficulties x


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 9:05 pm 
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Joined: Thu Aug 05, 2010 1:18 pm
Posts: 238
I would ask his Consultant to write to your GP requesting that four should be issued. I have a nut allergy and understand fully your worry. I last accidentally ate nuts about 4 years ago. I self-administered one epi-pen and the ambulance crew gave me another one on arrival at my home 10 minutes later.

I do not understand why your GP cannot understand the need for four. I guess the shelf-life is not very long and they are probably thinking about their budgets..... The problem with a child is that you need to supply school as well as home whereas I just carry mine around with me ... most of the time :oops:

Hope you manage to get this sorted as it is such a worry for you. My nut allergy started when I was 18 and has worsened over the years. Just a thought.


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 Post subject: Re: How many epipens?
PostPosted: Sat Oct 27, 2012 9:51 pm 
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Joined: Sat Mar 06, 2010 11:39 pm
Posts: 2080
Thanks for all your comments. I definitely feel more confident about stating our case. :)


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