So we have a diagnosis - would appreciate advice from any parents of cashew allergic dcs please...

[CasaBevron]

So we saw Dr Fox this week and had ds skin-prick tested. The only positives were egg, which we were prepared for as we have seen a reaction, and cashews, which I suspected but obviously hoped not to see . The SPT for raw egg was 11mm, cooked egg 5mm and cashew 5 or 6mm, I can't remember exactly which. He thinks that the constant hive reactions that I am seeing are a completely separate process, to do with the immune system and commonly seen in old people where the immune system is weakened. He also said that in the absence of any other underlying factors ie eczema/asthma, DS is a good candidate for outgrowing the egg.

So on the positive side, I don't have to have kittens every time DD goes near DS with her face covered in the remains of her dinner. On the other hand...

The doctor did not seem overly concerned about a reaction in the near future, which is understandable as we are not about to start feeding DS nuts or any nut-containing foods any time soon. He did not think we needed an epipen, and also advised not to worry about any 'may contain' foods. This confused me, I have to admit. My understanding was that even small traces of nuts can cause a reaction and can be present in any foods that have been produced in a factory that also processes nut-containing foods. While most foods seem to carry a warning as a 'cover' for the producers, it would seem wise to avoid them in the absence of any evidence that they don't contain nut traces??

We are back to see him again soon, when we will be able to see a dietician and talk this over further, but in the meantime I would really appreciate some advice on how those of you with cashew-allergic dc's manage.

TIA

Bumping...

Now that my head is clearer and I think back, I think that I was being told not to worry about the 'may contain' foods for us, not DS. Would still appreciate any words of wisdom that anyone can offer please...

Well DD2 has just been diagnosed with a peanut allergy (based on her RAST test) and she has always eaten 'may contain traces of' foods so I am not going to change that. A friend of mine was told similar for her dd who recently had a bad reaction to a fruit&nut bar.

Thanks Schulte, it's so confusing isn't it? I have had a few ups and downs over the course of this week, and am slowly getting used to the fact that most of what DS eats in the future will have to be made by me in order to ensure his safety. On the one hand it seems that life will be easier in that we don't have to avoid the 'everyday' stuff that I suspected might be a problem ie milk, wheat, etc., on the other it seems that all food possibly contains traces of nuts!

Dr Fox did say that we don't need to get rid of all nuts from the house (although we had already done that - I'm not comfortable with the idea of DD wandering around with a fistfull of potentially dangerous food) and not to worry about the 'may contain'. Maybe he did mean for DS too, rather than just for us?

We had our first taste of how life will be for DS at the weekend when we attended a family party which included a buffet. I was a paranoid wreck, getting people to wipe their hands if they had had boiled egg and wanted to hold him. As we were leaving, one of the rellies told me 'don't worry so much', as though I was getting the whole thing out of proportion. But how can you not worry?? I think I'm destined to spend the rest of my life worrying!

I am sure it will get better and you'll just roll with it, as will your ds. FWIW I have a nut allergy myself (to hazelnuts, pecans, cashews, brazil nuts etc) and although I always check all the ingredients lists and always ask waiters/friends about the food they serve, it doesn't feel all that difficult to live with. I have been doing this for over 15 years now and it really does become second nature. And if in doubt, I simply don't eat it. You get a good idea of what's safe and what isn't. But then I have never had a life threatening reaction and I don't carry an epipen myself.

The egg will be more difficult to avoid than nuts, but again DD2 has an egg allergy which we've lived with for 2 years now and I have become much more relaxed about it. I take her own cake when she goes to parties and I do watch her closely when there's a buffet, but we have eaten out many times (usually pizza or chips for her) and she's even had ice cream from an ice cream parlour.

Hi casa , my 9yr old ds is allergic to cashews.
He was originally diagnosed asallergic to all tree nuts when he was 18 mos old after huge skin prick reaction.
Also allergic to egg.
Since last yr he has now been told he is ONLY allergic to cashews and pistachios (they are related). He had a food challenge for other tree nuts and passed. I don't think he's ever been allergic to the other tree nuts , we've just avoided because he wasn't tested for specific nuts iykwim.
He also had a raw egg challenge but unfortunately failed so is still unable to eat raw state egg ie scrambled. he can however eat cake/homemade pancakes as they're cooked at a high enough temp to make them safe.

As for the eating things with the nut warnings ..well we judge at each hurdle. We tend to eat things with warnings if it looks likely there is a small chance of contamination ie nut warning on plain biscuit , or on something that blatantly does not have any nuts in it.
He does have an epipen , we asked at his last visit if it was still necessary and we were told it was . He is also asthmatic to that increases the risks.
Tbh we are fairly relaxed about things. We do have nuts in the house (as he is allowed them now) but we did before he wa diagnosed only allergic to cashews and pistachios. He has learnt to be cautious and ask before he eats .It has become second nature to him and us. We avoid chinese/indian takeaways.

We have travelled loads with ds used to always be self catering and with allergy translation cards. We've never had a problem.

Ds has very sensitive skin and quite often gets hives from god knows what. If they are large I give him some cetirizine. He has once had swollen lips from homemade brownies that I assumed the eggs were cooked long enough (oops)..a dose of cetirizine and he was fine :)

As time goes on you will become more relaxed about things but I understand how you feel.

ggirl - what do you do about playdates, parties etc? Send the epipen along plus instructions?

Cetirizine is my friend! We were given enough to last a month on a daily dose, so that I could get over some of my weaning fears. In a week he's eaten more than he has over the last month and a half! I haven't managed to bring myself to give him any of the major allergens yet, even though the skin-prick and blood tests were clear, but I do feel a little more confident. Now all I have to do is stop DD trying to lick his face when she's just eaten!

Thanks for sharing your experiences, it really helps to hear how others manage. I think the scary thing for me is not knowing how DS would be likely to react. I have read that the size of his spt indicates a 50% chance of a reaction, but it's still impossible to know how big a reaction that could be . Then you have all the other outside influences that could affect that reaction to factor in. Add that to the fact that even a bag of salad leaves from Tesco says it cannot be guaranteed nut free and it's a recipe for anxiety! Must try to relax...

I only send the epipen( it's in a box with instructions and phone numbers on the lid) to parties
I check what's on the menu with ds and the parent.
Ds agrees what he'll eat.When he was younger I usually offered to give him his own food but tbh the party food is usually perfectly safe.

I don't send epipen to play dates any more , ds is very sensible , he will take it if he's unsure whats going to be offered.
I must say that ds' allergy has made him extra cautious about eating away from home. He sticks to very crap safe food , fish/chips ,pizza,noraml home cooked unsauce stuff. He always asks about biscuits etc and would refuse if there was any doubt.

By teaching him to take care of himself it reassures him and us.

X-posted. Can't imagine ever leaving DS alone with someone else. I think I'm destined to be a true helicopter mum...

casa -how old is he?
I felt exactly the same when ds was younger . I was a nervous wreck.
I promise you will feel easier about things in time

Ggirl he's only eight months so no danger of him being left alone just yet!

Thanks ggirls. Can I ask another daft question. The epipen that I carry around in my handbag is just in the box/packaging it came in - should I put it in a plastic box to protect it a bit better? I am so new to all this, no idea how people do these things!

My DS epi-pens are out of the box in an allergy bag with a small bottle of 10ml pre measured puriton, the epi-pens instructions and his care plan and contacts.

I just hand over the bag. It's easier when they're older because you find you meet friends parents and they already know your child has an allergy/ epipens so it's not a shock for them to be left them.

Most people I've come across are pretty sensible - other than the 1 parent who decided my DS couldn't possibly be allergic to ketchup and squirted in on his plate to his and the party mums screams of NNNNNNNNNNNOOOOOOOOOOOO (and it's only a hives reaction )

Thanks, what's an allergy bag though?

I ordered him one from a website. Its bacically bag that carries everything in. It turns out the person who owns it is a MNer!

PM TinyTalker and she can send you the link - I can't seem to find it.

schulte , we use this website for bags .
Ds has his school ones in the big yellow school bag.
For home and party/going out use we have a plastic tupperware box , like a lunchbox size.
I have stuck a paper on the lid with phone number , symptoms to watch out for and instructions on what to do.
It's stuck down with masses of cellotape.
In the box is a bottle of cetirizine and spoon , his space inhaler and salbutamol inhaler along with two epipens in the one of the yellow tube holders in that site. I have also got a practice tube in there to show people how to use it.
The box is kept in a small rucksack and lives on the coatrack at the front door.
If he's going out to eat he takes it. Sometimes I just bung the tubes in my bag if I don't feel the whold caboodle is necessary and just want the reassurance of the pens.
In the summer if it's really hot I just make sure the pens are kept out of extreme heat.

Oh excellent, thanks ggirl. I'll get one of those mini bags. One more question if I may? Do you always carry 2 epipens for him whereever he goes? I was given 5 in all - that's 2 for home, 2 for her nursery, but only 1 for the other preschool she goes to. Should I insist on getting a sixth?

PS CasaBevron.. sorry for hijacking your thread!

that's a contentious issue at the moment
our allergy consultant at the last visit (march 2011) said the current guidelines are to carry just one , so only one needed at school etc.
However this is not broadly agreed with or known . I told ds' school this and they insisted he must have 2 , different protocols set by local pct .

The allergy consultant said the evidence shows that 2 epipens are rarely needed if ever hence the change in advice.
Some people view this as a cost cutting measure which it probably is to a certain extent.
May be worth looking on anaphlaxis campaign website to see what info they are giving.

sorry to answer your question we do carry two , for how long I don't know

No problem, I'm getting a crash course in allergy management here!

' I think the scary thing for me is not knowing how DS would be likely to react. I have read that the size of his spt indicates a 50% chance of a reaction, but it's still impossible to know how big a reaction that could be '

casa- this is def scary .When ds had his food challenge this summer they said that when he is senior school age he will come in to have a challenge with cashews to see what his reaction is. This is for two reasons ,one to find out exactly how dangerous it is for him and two to teach him the signs to look out for as he'll be much more independent regarding using the epipen etc.
I was really reassured by this.

As your ds is so young it is much harder for you , when he's toddling around it does get stressful in certain settings trying to control their exposure. I stopped going to one playgroup when ds was 1 because there was cakes and biscuits left all around. I found it too nerve wracking. Things get a lot easier when they are old enough to be taught not to pick up food and put in their mouths.

Ggirl, do you mind me asking has your DS ever had an accidental reaction to nuts or will the challenge be the first time? It sounds a very sensible thing to do but I can imagine he will be apprehensive about it. You need nerves of steel for all this, don't you?

You are right about groups etc being stressful. With DD I went to loads and made a group of brilliant friends that I still see most days. I don't want DS to get a crap deal but at the moment I am fearful of everything that goes into his mouth so I think I need to work up some courage and start getting out and about again or I am at risk of losing touch with my friends. And my sanity!

Casa, I know what you mean about getting out and about. You should see me in DS's playgroup, when the snack bowls come out. So as not to appear completely pfb (I know, who cares what anyone else thinks when it's your DC's health in question), I take one of them and then spend ages fishing out the raisins that haven't been touched by the breadsticks, no doubt to the utter bewilderment of other mums! then spend the rest of the time following him about. Have become what I used to hate when childless, the sort of mum who pretends to be listening to you while actually being completely absorbed in what their DC is doing!

ds has had one bad reaction when he was about 2, don't know what caused it
resulted in asthmatic attack
no hives on his face weirdly though
just went really quiet after crying for a bit for what appeared to be no reason
then coughed ,clutched his throat
was breathing ok I thought but was strangely quiet and not a good colour
O2 sats were in low 80's when he got to a&e
luckily perked up without need for epipen , just needed O2 /nebs and antihistamine

so he's never had to use pen , has had quite a few lip swelling from eggs , quick spoon of cetirizine and he's fine
His asthma is much more controlled now