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Epipens - for unknown allergen reaction?

(16 Posts)
mumbar Tue 30-Nov-10 21:13:26

Firstly thanks to all those who supported me Saturday evening.

Have seen GP today. Told him about DS' symptoms and showed the pics as well as the morning after pics and he was quite concerned about the facial swelling. He agreed seems like allergic reaction and the rapid breathing was a worrying symptom.

We do not know the allergens involved, ketchup is one but not tomatoes and he has hayfever, so pollen.

GP dictated a letter to DS' pead cons who he saw in March asking for advice about needing anything else at home. Gp mentioned about maybe having an epipen.

I'm not sure what I feel about this. Does anyone else hold an epipen for unknown allergy and does this have any further 'effects' on their life beyond say having AH medication?

TIA

mumbar Tue 30-Nov-10 21:36:32

.

greenbananas Tue 30-Nov-10 23:09:04

DS has epipens for various allergies. It's a right old pain carrying the pens around everywhere we go (even to the post box!!), but I think it's definitely better to have than not to have them.

I think an epipen would be especially useful if you're not sure exactly what your DS has reacted to.

Obviously as mums we do everything we can to avoid our LOs experiencing these horrible, frightening reactions but sometimes we do have to take 'acceptable' risks (e.g. letting DCs join in ordinary activities with other children, use play equipment which may have traces of allergens, eat food which 'may contain traces'). I've found that having epipens gives me just a little bit of peace of mind.

I don't know if this will help, but I had to give DS his epipen for the first time a few weeks ago. Before I took the safety cap off (!), he was pale, sleepy, apathetic, covered in hives and still swelling. The epipen reversed his reaction very quickly and he was totally fine within a few hours. I am very much in favour of carrying epipens!

mumbar Wed 01-Dec-10 07:02:30

Thanks greenbananas. I remember the thread and thinking I'm glad DS only has mild allergy as it seems really scary.

The thing we have is theres no way of confirming this is allergy although the symptoms would point to it.

He suddenly felt extremely cold - was really crying about how cold he felt, he gets a red, spotty/ wlets on his face only, his whole body skin was mottled this time, his eyes went black, face swelled and bottom lip, his nose became very blocked and his breathing was rapid, 36 bpm, although uneven.

I was terrified if I'm honest, and he seemed it too.

I guess I was expecting the GP to say, probably a virus, refer for mopre testing and it was a shock when he dictated a letter to the pead cons asking if DS needs anything else at home, telling me not to delete the photos etc, and maybe epipen needed.

It becomes a reality then iyswim.

tinytalker Wed 01-Dec-10 11:16:52

You mentioned his reaction to ketchup but not tomatoes. Have you researched celery allergy? It quite a common allergen and is often severe as you describe. It is one that is often overlooked but once you start investigating it is amazing how many sauces, gravies etc contain celery. Maybe worth looking in to?

mumbar Wed 01-Dec-10 18:24:30

thanks, will do.

greenbananas Wed 01-Dec-10 19:30:42

mumbar, I'm just so sorry to hear that you're going through this. I've been thinking back to when DS was prescribed his epipen (he was about 9 months old) and how bizarre and terrifying it felt. Like you said, it makes the allergies a reality.

When I went to see DS's GP (about something else entirely), I wasn't expecting DS to be prescribed an epipen and it felt really weird/scary to be given one. I had worked with children who carried them and had always felt so sorry for their mothers - I used to think, "how do you deal with the constant fear and stress?" - but now I realise that it just becomes part of life and that you deal with it because you have to.

Although I have some lovely friends in RL who do everything they can to make sure DS is included in everyday stuff, I've never met anybody in RL who understands what it feels like to be given an epipen for their child.

Given that your DS has had some quite worrying symptoms, I'm really glad you have been given an epipen. Take it with you everywhere you go! He will probably never need it... This just helps you to keep him even more safe than you were keeping him before.

topiarygal Wed 01-Dec-10 19:49:11

Oh I am sorry - it is scary. But it sounds very sensible to have an epi-pen, you know if you have it with you, you'll always be safe. My son is idiopathically allergic which means that though we know he is allergic to certain nuts, he also can just go into anphylaxis without a known cause. I was so worried when I first got the pen and started to think through the enormity of it all. Now I feel as long as I have the epi-pen (my magic wand)everything is going to be AOK. And it is - good luck and make sure you get a referral to identify what is causing the reaction - my son's condition is really, really rare.
good luck!
tx

mumbar Wed 01-Dec-10 21:05:17

Thanks Greenbananas and topiar.

I haven't been given an epipen yet. The GP had said he thinks DS needs one but has written to the pead cons to ask advice.

TBH at the minute its the whole limbo. The if he has one how will this affect him and if he doesn't the constant fear and worry about not being able to 'undo' a severe reaction.

I have had a good think since seeing the GP and talking on here and have decided that as tropiar says as the allergen is seemingly unknown and probably airbourne having a 'magic wand' (as I will think of it as) is actually a positive thing despite the ovbious difficulties it can add to everyday life.

Thanks again, its lovely to be able to discuss this with people who have been where I am now and get some advice and perspective.

mumbar Wed 01-Dec-10 21:08:23

'lovely' hmm - well maybe not but I hope yswim. More I know I'm (sadly) not alone.

nottirednow Thu 02-Dec-10 07:15:46

Message withdrawn

mumbar Thu 02-Dec-10 07:48:50

Thanks nottired now. Thankyou for mentioning rashes. He usually gets a rash main symptom ( normally mild reaction) and this time it was there but not the same iyswim.

I called DR but not ambulance at the time but will next time.

I am going to push for a epipen now - hopefully just for peace of mind (not use!).

BarbarianMum Thu 02-Dec-10 20:10:42

I agree that an epipen would be especially useful if you don't know what is causing a reaction.

My ds1's best friend has an (anaphylactic) reaction to cmp and is also anaphylactic to a (as yet unidentified) garden shrub.

He has never needed the epipen for a cmp reaction cause everyone is careful to avoid this with him, but has needed it x3 in the past 6 mo for the mystery shrub.

mumbar Thu 02-Dec-10 20:51:27

The shrub thing sounds like my DS. He has hayfever, and had chlorphenamine daily the whole summer and even then had a few times where the burn like welts appeared on his face, and eyes swelled. Once he even clutched his throat complaining.

It seems controlled by the AH when a reaction occurs, but it is the worry it won't always be, and the reassurance that if it isn't the epipen will help.

BarbarianMum Fri 03-Dec-10 16:39:48

Mumbar, it is grim isn't it? sad

Makes me realise how lucky I am that ds1 has to eat something in order to react.

Friend and I are trying to compile a list of vegetation everywhere he has a reaction and cross-reference it in the hope of finding a common cause but it is soo difficult. Easily 20-30 possible suspects each time it happens.

mumbar Fri 03-Dec-10 16:49:16

Well I've gone against my promise of a real xmas tree this year (made last xmas before this began). Have compromised with a 6ft pre-lit one from ASDA hmm. Think I may have been conned in my moments of sympathy to DS grin.

I am thinking some sort of vegetation becasue 2 years ago DS came up in nettle rash head to foot just walking to the car, then had mild hayfever, this year bad hayfever and then extreme allergic reaction.

It may be a food other than ketchup but its never the same thing he's eaten peanuts have been ruled out.

let me know how it goes with friend.

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