Hello, new anaphylaxis diagnosis (cashews) - some early questions?

[Pawsnclaws]

Hello - ds3 (aged nearly 3) has just had a very scary 24 hours in hospital after putting a cashew nut in his mouth and spitting it out. Cue hugely swollen face and neck, blistered lips, all-over rash, lethargy and a dash to A and E.

They were fabulous and diagnosed anaphylaxis - gave him some adrenaline, piriton and Prednisolone, kept him in overnight. His blood pressure quickly got better (though his face is very swollen and red still) and we've been given two epipens, and two day doses of the piriton and Prednisolone. He's being referred to a dietician and an allergy clinic.

Now obviously back home and on very little sleep I've scared myself witless googling ......

Just two really quick questions - we've been told to avoid all nuts for now, but what about other possible triggers I've read about like bites and stings? Is he more likely to have a problem with these? Secondly, my initial (panic) reaction is to worry about his two brothers too - should I get them tested (presumably privately)?

Any advice appreciated - thanks.

Poor you. It's terrifying isn't it. Sounds very similar reaction to my daughter who has a cashew nut allergy (my son hasn't, though has never been tested but ate the same stuff she reacted to) concentrate on the avoiding nuts advice. Check labels so you can avoid all products that may contain nuts or that are manufactured in a factory with nuts, just to be safe. You'll be horrified to see just how many there are.

You will need to alert nursery / preschool as well of course if she goes and anyone who maybe caring for her when you aren't. Epipens and piriton to travel with child of course.

You could keep a food diary if you suspect other allergies ready for when you see the allergy clinician and dietician.

Don't know about stings or bites as haven't experienced those but you have piriton and you have the epipens so these would be manageable.

You're probably in shock! My advise would be don't google at this point...too scary..this is a safer place to ask your questions there are alot of experienced parents on here with fab advise...I've found it invaluable.

It's not as scary as it first seems honestly :)

Unless you have particular concerns about your sons I wouldn't think that testing them would be necessary but someone on here might know better than me.

Oh I am sorry- it's really terrifying. Sounds like you're in shock - and so you ought to be - it's so traumatic. It also sounds like you did brilliantly - A&E was the right move and you've made sure you've got the epi-pens as your rescue and the piriton as a preventer. And honestly - epi-pens are magic wands - if you ever need to use one you'll soon come to see them as wonderful instant cures.
It sounds like you've been really well looked after. Don't worry overly about your other children - are they older? likely to have been exposed to most allergens? And as for stings - totally unrelated but as shouldbeelsewhere says - you've got your equipment now so no worries.
Do get a referral to a good paediatric allergy consultant - do a shout out on this site for a local referral. Ask them for further tests, and ask about which antihistamine to use if this is to be a permanent preventor for your child. There are better ones out there for kids (e.g. citirizine and loratadine/ desloratadine depending on your DS' age and weight).
Good luck and do something nice for you - it's horribly traumatic but it does get easier.

Thank you so much for the wise words, this is why I love mumsnet!

I was most worried about the bites/stings, as with the food I feel I can really err on the side of caution and be super careful, so that is reassuring. I'm definitely feeling the shock, I was super calm at the hospital but now feeling a bit sorry for myself and trying not to be overwhelmed!

Also blaming my genes a bit, as I have gifted poor ds3 my dreadful hayfever and eczema. I'm also allergic to penicillin and some fruit so I guess I'm the culprit.

Anyway, ds3 is now snoozing quietly on the sofa (DH won't put him to bed) so let's put the worst behind us - onwards and upwards, right?

Please don't blame yourself. You did a great job and how on earth could you have possibly known that your ds3 was allergic. Be gentle with yourself.

Wishing you all a peaceful night, the worst is over.

Thanks all, I was really pleased and reassured by A and E, they acted very quickly and professionally and I felt they seemed to have good specialist knowledge. They clearly have a care plan in place, which is great when you're scared and not thinking direct.

Not so happy with NHS Direct - I phoned them immediately his face started swelling, and they dithered and said he was "probably fine" if he wasnt having trouble breathing, before we then insisted they call an ambulance. I now know from talking to the consultant that the swelling outside was a sign of the swelling inside, and that his lethargy was a sign his blood pressure was dropping rapidly. But - a lesson learnt by me and next time it's 999 without delay.

I hope you're feeling a bit better today. Well done on being so brilliant with getting the right treatment, and you're right, just 999 without a question.

I think the first month or so after my DD's first anaphylactic reaction were so hard. I was constantly swinging from extremes of emotions of crying my eyes out and wondering whether I'd ever see DD grow up, to anger at how difficult life would be for her with a nut allergy as it's in practically everything. And the constant label reading at the beginning just made me feel even worse. But it does get better and easier. And epipens are amazing, they work so quickly, I've used them 3 times this year and each time I've become much more confident in using them knowing how quickly they work. As said here always take them with you everywhere, and get extra sets from your GP for any childcare arrangements and a set for travel and keep the ones you've been given at home, somewhere everyone knows they are.

Cetirizine or loratadine would be better suited to a 3 yr old too like top said. They are longer acting so only need to be given once a day. And agree with a good paediatric allergy referral, we have had experience with not so good ones but here is a great place to get advise from, for everything. Avoid google, especially during the initial stage.

Insect bites are not related to food allergies, and allergies to insect bites normally occur in adults while food allergies are more common in children.

Normally when you see the allergy specialist they will discuss with you if your other children need to be tested. The thing is now you know what to look out for, so if they did have a reaction you could use the epiepens on them. But fingers crossed they are ok.

Do read up the care plan on what an anaphylaxis is, even a sudden change in voice or sudden constant coughing is a sign of the airways closing and requires epipens. Please remember you cannot do damage by giving an epipen inappropriately, but you can by waiting. Adrenaline is very short acting and will just cause your DS's heart to race for a bit before settling back to normal, if in doubt use the epipen. I didn't know this until I went on a support group by anaphylaxis uk. They are amazing, I highly recommend joining them. HTH. :)

I second the advice about NOT calling NHS direct. I got put through immediatly to DR who said they'd tell GP I called. Despite all symptoms your DS had inc rapid breathing it was not advised I needed to be seen. DS got prescribed epi-pens after going back to Cons.

You did absolutly the right thing - 999 without delay. I'm also glad you got great treatment at hospital.

All I can do to second all that's been said above. Also about using epi-pen whenever throat gets hoarse. Do be aware though apparently there is a thing called allergic laryngitis (usually when allergen is airbourne such as pollen) and I had daily panic attack in April when DS lost his voice everytime we left the house.

Chocamum, I left the hospital all smiles and thanks, then went and sat in the car and had a big cry. Feeling much better thank you!

DH loves mumsnet, he's been reading the allergy threads all day. I've no doubt I'll be on here regularly with silly questions.

Youarekidding, that's really scary. The consultant we saw was utterly disgusted with the NHS Direct response (but not surprised) - hopefully that will get fed back and the relevant person will get some extra training.

My GP took one look at the 'post reaction' photo I had taken. (we were already experiencing random reactions and was told to document) and referred back to cons pead suggesting epi-pens.

Have a thread now on positive news re my DS though so rather sailing sky high todat.

aww what a scary time you've had!
Glad your ds is ok now.
My ds is also allergic to cashews , as well as pistachios.
The allergy consultant said that cashews and pistachios are related to each other and slightly different to other tree nuts...def news to me.
Ds is 8 now and has had further tests that reveal that he is not allergic to any other tree nuts!

paws I'm glad you're feeling better. Bt do expect a rollercoster of emotions I'm afraid, it's a major diagnosis that has such a huge impact on day to day life. The thought of parties scare the hell out of me. And the battle with people not taking it seriously just adds to the stress. But somehow it does also get easier, so hang in there!

kidding that sounds so scary when your DS kept losing his voice, I would have been a nervous wreck.

ggirl good news about no more allergies for your DS.

Thank you all - it's been so helpful to hear your stories. Feeling ok today, ds3 is already asking "does it contain nuts?" to everything I put in front of him (pretty much his first full sentence!) I think the whole hospital experience was a massive shock to him, and really unpleasant - he keeps talking about being sick (when he got up to the paediatric ward from A and E he vomited massive amounts - literally filled three bowls and the bed too).

I feel pretty in control of what's in the house, but our first test will be camping with friends next weekend - the plan had been to eat out in the evenings, but I think that now sounds impossible. I'm very slowly coming to understand how life-changing this is for the whole family. Looks like me and ds3 will be eating a packed tea in our tent!

eating out is not impossible with an allergy

you have to realise that nobody is going to guarantee anything is nut free , society is too paranoid about being sued.

When we eat out with ds we choose stuff that obviously will not have anything to do with nuts in it ie. fish and chips , burgers, sausages. So kid friendly crap really

as for the oils , the latest advice is that the groundnut oil used in restaurants is regarded as safe because the nut proteins have been removed.

Chinese/Indian restaurants may be more difficult as they may use unrefined ground nut oil.
This is advice we got from the Anaphylaxis campaign and our allergy consultant. Have a look on their site .

but I totally understand that you are not feeling ready to eat out yet ...I felt exactly the same

Thanks ggirl that's really helpful.

We have two pens right now, one at home and one in my handbag which is always with me/him, but I've made an appointment with our GP this week to discuss anything else we need. I was assuming two might be needed in any emergency situation, is that right? Out of interest, do you guys carry antihistamine with you too? I take it myself every day between about March to September as I get dreadful hayfever.

Another question if you can help, is standard plain or self raising flour considered pretty safe? I do a fair bit of baking and it would be good to know that he can still have homemade cakes and biscuits (though I've binned the baking powder I had as it said it may contain nuts). The other thing I've realised is how much we rely on dried fruit snacks which he loves but which all seem to be a bit risky (according to the packaging) in terms of contamination - we may have to replace with sweeties!

Well done Pawsnclaws for such a quick response. My dh is allergic to all tree nuts especially cashews. Has exactly the same reactions as your described above. He had an epi pen when younger but just gets by carrying pyriton wherever he goes now. We eat out all the time, just have to be careful and ask - especially curries as they often sneak cashew nut paste into things. Even supermarket indian food can have it in so watch out!!

He has had a few silly incidences when he hasn't checked and usually spits out any food when his mouth starts tingling, then takes pyriton. It takes him a while to recover but it is manageable. His stupid mother puts almonds in her crumbles when we go round for dinner even though she knows he's allergic (we think she thinks he's fibbing) so other people are not always as understanding as you might think.

However he is not allergic to peanuts because they are acutally related to peas not other nuts which grow on trees. Might be safer to avoid them anyway but the two are often separate. Dh only found this out after I had epi pen training as a teacher and has been enjoying snickers and crunchy nut cereal without a hitch ever since.

My ds is 20months and we're not giving him any nuts till he is able to tell us if something is wrong as a precaution.

Hope this gives you some light at the end of the tunnel.

At ds' last visit to allergy consultant , he said the latest advice is you only need to carry one epipen , he said the evidence shows that the 2nd one is never needed (according to evidence I guess).
Ds' school still require 2 because that's what they're protocol is.

Thanks babybarrister that's useful information.

Clairey sympathies your MIL doesn't take your DH's condition seriously. We've already had my MIL's take on the situation which is "well it never happened in my day" (which we expected because that was how she reacted to ds2's gluten and wheat problems - apparently we were being "faddy" for avoiding something which gave him chronic diarrhoea!)

Sorry to contradict you ggirl but a few months back we had to use 2 epipens, I was a bit unsure but I had somebody on the phone through 999 the whole way. My DD had initially appeared to start choking (which seems to be the recurrent theme with her reactions) and then her voice went hoarse, she started looking like she was struggling to breathe and then she went floppy. I gave her the first epipen, had her on the ground with her legs raised and then called 999. She came round very quickly but she kept on coughing and her cough sounded strange, as well as her voice remaining hoarse. It took the ambulance 15 mins to get to us and after waiting for 10 mins I was told to give the second epipen because DD was still coughing etc. Her coughing stopped but her voice actually remained hoarse until the 3rd day of steroids were finished. So i would say from what happened to always carry two. Adrenaline is very short acting so even in situations were one is enough, it may have started to wear off before the ambulance arrives so a second one would be needed.

Re baking, DD has a peanut and trea nut allergy (amongst others) and all the flours I have bought are nut free. Most baking powders are nut free too. You can buy nut free chocolate. Sainsburys stock a range of cakes by the 'just love food company' which are all made in nut free factories and handy for cake emergencies! Dried fruits - kiddylicious do a range of dried fruits that are nut free. Things like Heinz biscotti are also nut free and Plum cheese puffs. If you need an equivalent of coco pops because cereals can get difficult and boring, doves farm do an equivalent which is nut free too.

I am a bit scared of eating out too, but mainly because of the combination of dd's allergies. But we do just as ggirl has advised of ordering junk food. Generally McDonalds and Pizza Express and pizza hut seem to be very good.

Unfortunately it does have a big impact on your life, but you get better at managing it and as a result it has less of an impact on what you can do in the long run, just lots of planning is required, and always keep snacks on you, especially when you're away from home and could have difficulty getting hold of nut free products.

Glad to hear you being so positive, I was still a complete mess at this point. And good luck for camping, I hope you manage to all have a good time.

chocagirl-no don't worry I was just repeating what Consultant told us , I was a bit surprised when he told us tbh and obviously it was needed in your case.
Glad your dd is ok ,sounds a terrifying ordeal.

Thanks ggirl, it was so scary, I was shaking all the way through. But the reactions DD has had since I've been so much calmer and quicker to react so I know something positive has come out of the scary reaction. So as a result we have lots of epipens!