Nut allergy sufferers in the locality? Please help!

[fuzzyboots]

My younger son's just been diagnosed with a severe nut allergy and we've duly taken charge (yikes!) of Epipens and almost more antihistamine than I can shake a stick at. Which is fine. He also has asthma, which is par for the course, but doesn't help.

But I have to say I'm struggling to get my head round the implications of a totally Nut Free Life. I'm waiting for an appointment with Kings' Allergy Clinic and Dietician, but would really like to make contact with people in the same position as me who are actually living with it.

Are there any local families/allergy groups that meet round here? I definitely feel in need of some moral support. The idea of facing a life where I have to introduce my son with "And he's got a severe nut allergy" as part of his name and then demonstrating how/when to use the Epipen/antihistamine fills me with dread/despair.

And how on earth do you deal with parties/school outings, etc?!

Feeling a bit overwhelmed with the responsibility of it all, not to mention the very flippant attitude of some of my husband's friends(6), who seem to think that I'm fussing about this potentially fatal allergy. Dear God - as though I'd choose this for my son/our family lifestyle:'(.....!

Sorry - rant over! But if anyone has info/support to share/guide me to, I'd be really, really appreciative.

Thanks,

Trish

x

[malleymoo]

Sorry not a nut allergy parent but as no one else seems to have responded and you sound so fed up I thought I would reply. So sorry you have got to deal with this worrying condition. First off completely ignore idiotic husbands friends maybe they think they are being helpful by being flippant- they sound deeply immature/unab,e to deal with emotion !!

I know lots of schools are geared up for dealing with severe nut allegies and even in nursery I remember how strict they were about birthday cakes coming from nut free environments. Not sure how old your child is but would suggest like anyother parent that when he starts school quickly try to get to know the parents of his friends and arrange playdates when you can attend till you can build your confidence in them.Whilst im sure you may have some who feel they would struggle to deal with the situation just agree their child can come to your home where you can controll the environment more easily.

A few of my daughters friends have allergies though not to the same degree and i like most responsible parents will always check before a child comes to visit about any special requirements. A friend of mine reguarly has her daughter's friend come to stay who has very serious asthma attacks. Whilst my friend was rather concerned at first she made sure she had written instructions on how to deal with emergencies and whilst she has had to deal with a couple of streeful situations is accepting of this as she recognises how important this friend ship is. so hopefully parents will respond positively to you and your son.

Might also be worth checking for online support services as im sure there are many parents in your situation who are also struggling to work out how they will manage these situations. Hope someone local responds soon

[nymom]

I dont have a child with a nut allergy but am a teacher. I had a student with a severe nut allergy. In addition to the epipen training etc, I had her mum bring in lots of treats that would last throughout the year for birthdays/celebrations. I was too afraid as her teacher to give her anything that another student brought in, despite the fact that other parents were aware of her allergy. This way when it was time for the parties this student never felt left out and I didnt have to worry about her eating something that had even a trace of nuts etc. It is hard because there are lots of foods that dont necessarily have nuts in them but are made where nuts are handled. And lots of people dont realize this when providing food for other kids.

[fuzzyboots]

Thanks - that's really helpful advice. I'm just a beginner with this allergy lark. I have to say, I was probably in the slightly flippant camp myself before the birth of my youngest, and he's not only nut allergic and asthmatic, but has wonky eyesight and only one kidney which has severe reflux...

But honestly to look at him, you wouldn't suspect a thing, which is great. Mercifully he's not a sickly little thing - quite robust in fact and certainly not going to let these things get him down.

I really like the suggestion of providing alternative treats through the year - I hadn't thought of that at all. It would take the worry/risk out of things for everyone concerned by doing that. I really don't want him to be stigmatised or set apart any more than absolutely necessary because of the nut allergy and nor do I want to put his significant people like teachers, friends, friends' families in difficult situations either.

I did rather alarm our babysitter the other day when I went through the anaphylactic shock procedure! Guess I'm going to have to get used to that.

Thanks so much for responding. I've also received a lovely PM and phone call from a grown up nut allergy sufferer which was immensely helpful and reassuring.

[Gimme]

Not a parent (yet - October...) but I've had a peanut allergy for 36 years (although it's not so severe that I need an epipen which makes things less stressful...).

It is quite possible that your son isn't allergic to all nuts - I only get a reaction to peanuts and a little bit to hazelnuts. I also avoid walnuts and cashew nuts but not sure there is a rational reason (apart from they have the same texture as peanuts therefore scare me). All other nuts are fine. Also peanut allergy sufferers are often not allergic to peanut oil, just the protein.

Anyway, what I'm getting at is that you need to find out exactly what he's allergic to and reduce your fears about everything else. It's taken years of accidently eating all the other types of nuts and not getting a reaction to rule them out but I'm sure modern technology can tell you that much more quickly these days.

I've had a reaction to peanuts once in 5 years (i.e. I've only eaten a peanut once in that period) through knowing exactly what to look for. Beware of all cakes, desserts, biscuits and chocolate confectionary. Also be careful with all oriental food. But remember that you're unlikely to find peanuts in loads of things - generally most British and European food (other than dessert) doesn't have nuts in it and should be safe. I don't bother checking most starters and main courses in restaurants unless it's a Thai, Indonesian or Malay restaurant.

The key is to be prepared if it does happen and to try to avoid it happening as much as possible without getting too worked up. As with everything, the stress of worrying about something often makes a reaction more likely or worse if it happens so the best thing to do is to avoid making your son constantly worried.

Good luck. It might not be as bad as you fear and may not affect his life as much as you think.

[Gubodge]

My younger daughter has multiple food allergies, including nut, although they do not sound as severe as your son's. It is an awful shock when they are first diagnosed, but I've certainly found dealing with it easier than I expected. It does require a bit of effort and pre-planning, but that just becomes the routine.

Schools and nurseries are very used to dealing with allergies, and he will probably be safer there than anywhere. We ensure nursery have a supply of all the alternative foods our daughter needs, along with a selection of longlife sweets and cakes in case the other children are given treats, and when we go to birthday parties I take a selection of 'safe' party food so my daughter doesn't miss out. Fortunately she now appreciates my efforts and my homemade sausage rolls, cakes and biscuits now actually get consumed. There was about a year's worth of parties when they were scorned in favour of grapes and cucumber sticks, ungrateful little sod.

[fuzzyboots]

Hi Gimme/Gubodge

My boy's got a severe allergy to peanuts, and a moderate allergy to hazelnuts, almonds and coconut. I also know that he's allergic to sesame and walnuts through experience. So I deduce that cashews and pecans are definitely off the menu. I completely take your point about learning which nuts he's actually allergic to, but until we've seen the dietician/allergy clinic at King's, I've been advised to keep him absolutely nut free as far as is possible.

Yes, I'm already adapting to the no nut regime, but remembering to take the Epipens every time we leave the house is proving a bit trickier!

I'm confident that his nursery (Puddleducks) will be absolutely brilliant at keeping him nut free. I also received another really helpful pm from a teacher who recommended that his medications be kept in a box with his picture on as well as his name and that allergic children were trained to use a code word if they started to feel odd, so that a) any adult could get the right meds to him without needing to know his name and b) they can act quickly.

As for parties, I shall just have to be organised (gulp!) and provide him with nut free food and alert the party host/ess to the need for foods to be nut free.

Fortunately my boy is an absolute fruit fanatic, so if that's all he needs me to send him with to parties, I, for one, shan't be complaining. He doesn't like cake anyway (he's very slightly intolerant to eggs), so that's not an issue, thank goodness. And he's not bothered with pastry in any guise. Thank goodness pasta is nut free!

[cynthia80]

Hi, I'm not a parent of an nut allergy sufferer but my brother has had a severe peanut allergy all of his life so I grew up in a nut-free house. He started carrying an epipen when he went to university 8 years ago. While at university, the college canteen had his photo up in the kitchen (a bit like the teacher you mentioned suggested). There are warnings on most confectionary these days but I know there is one brand of chocolate though (can't remember the name, sorry) that is made in a nut-free environment (useful for christmas/easter). Basically, my mum got around it by making everything from scratch so she knew there were no nuts in it. A little time consuming (especially with boys who eat everything in sight!) but once you start looking out for the warnings they really are on everything. Anyway, I just wanted to say that the warnings, endless ingredients reading, epipens etc all become part of life after a while and it will, eventually, all just become automatic. Good luck and I hope the meeting with the dietician at kings goes well.

[peckhambelle]

Hi Trish, my 2 year old son was diagnosed with a severe allergy to peanuts and tree nuts a few months ago after having an anaphylactic reaction at a family gathering. I've spent the last few months trying to get to grips with it and have found some excellent resources are available. We are with the allergy clinic at St Thomas', and the care we've had has been excellent, despite the waiting lists. The Anaphylaxis Campaign was our first port of call for information, they have excellent resources and helpline, plus they have an allergy alert service. I also found the British Allergy Association really helpful for advice on managing our son's other allergies to dust mites, animals, grass and tree pollen. Kinnerton's is the brand of nut-free chocolate (Morrison's stock it), but I'm just trying to remember that while I think of chocolate and ice cream as a treat, my son prefers fruit and rice cakes and won't know any different. Like you I've been dealing with nurseries, carers and teaching friends to use epipens, educating family members (yes, 'just a little bit' will harm him) but we've survived a family holiday to France with the help of translation cards explaining his allergy, so it is feeling a bit more manageable now. It does seem a lonely road sometimes, so would be great to be in touch for local moral support. Happy for you to PM me to set something up.

[womanofdulwich]

one of my sons friend had a severe nut allergy and when he was young and when she told me in advance- i think the whole class know- there were always hula hoops at parties and grapes/ satsumas- thoughtful hosts- and she used to provide him with his own party bag. i think she hovered the first few years and then when he was older -(maybe 9?) she used to leave him with the epipen and gave me a quick briefing - but really as long as you forewarn i think most other parents would be sympathetic. i do seem to remember that chips were an issue as - I think Kens in half moon lane do not use nut oil but other chip shops do. i am sure they is probably a child in every class or 2 with either a wheat/nut allergy. my own son was vulnerable to febrile convulsions and i walked every where with a bottle of calpol and had to explain whenever i left him.

Good luck Trish, men can be so insensitive.