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Allergies and intolerances

DS 1 nut allergy diagnosed today...

24 replies

KathrynAustin · 24/06/2009 15:17

I'm in shock really as I thought we'd get the all clear from DS1s blood test!

Turns out he has Grade 4 mixed nut allergy and Grade 3 peanut allergy. Don't know what the grades mean and the GP said not to get hung up on them, the fact is he is allergic to nuts.

I'm a nurse but work with adults and feel so overwhelmed that he has to live with this condition for life.

DS1 is almost 4 1/2 yrs.

We've been referred to St George's allergy clinic (SW London) - anyone have any experience of the clinic?

Should we have DS2 - almost 2 - checked out too?

How do we manage with birthday parties, packaged biscuits and cakes? I'm so sad for him!

Any help appreciated!

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TheOldestCat · 24/06/2009 15:21

No time to post much at the moment, but can I just reassure you a bit? I've been allergic to nuts (not peanuts) all my life and am fine. It must be very worrying for you, but you will learn how to cope with it - and so will your son. Lots of great advice to be found on mumsnet and here.

Sorry to hear this by the way. And I do think some children grow out of it, so fingers crossed.

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TheOldestCat · 24/06/2009 15:21

No time to post much at the moment, but can I just reassure you a bit? I've been allergic to nuts (not peanuts) all my life and am fine. It must be very worrying for you, but you will learn how to cope with it - and so will your son. Lots of great advice to be found on mumsnet and here.

Sorry to hear this by the way. And I do think some children grow out of it, so fingers crossed.

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OrangeFish · 24/06/2009 15:29

Sorry to hear the news, I know how devastating they can be. But rest assured you have come to the right place. I have found a lot of support and information from other mums here.

First, the results of the test, what do they mean?, well... it depends on the test (are we talking of RAST? ELISA?) but I would say that the higher grade it is about how likely your DS is to have a reaction to peanut rather than about the intensity of it. (DS results for sesame are minimal yet we have ended up in hospital for that, while the egg's results are unbelievably high yet... no severe reaction on that front)

How do you manage? well... I would say that... One day at a time. Eventually dealing with it would be second nature. Don't forget that nuts are very very easy to avoid as they are clearly included in the label. It is an allergy that other people take more seriously.

Regarding birthday parties... I pack everything, from the cake to the sweets that may be used in the pass the parcel. Having said that DS is allergic to so many things that I'm sure you won't need to go into such trouble. Most mums and party places do not include nuts, just in case.

If you have not been given an epipen yet, carry piriton syrup with you at all times. Let the school now about this, and ask to talk to the school nurse to draw an action plan.

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beggsie · 24/06/2009 16:40

Hi there.

We're in a similar situation - ds just diagnosed with brazil nut allergy (not peanut) and waiting on tests for other tree nuts. I agree that it is really shocking at first, but we are only a couple of weeks in and already I am feeling a little better about it.

Having said that, I've just had a conversation with him (he's 4.3yrs) about the anapen as was advised to warn him what it is should it be used. He is SO not happy about it - breaks my heart.

I think there is a lot of information out there and we are struggling to work out what level of risk to take/what things are relevant to us etc. We are trying to decide on a holiday and finding it a real headspin!!

Hang on in there - I am sure (hope!) that it will become second nature soon.

Beggsie

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tatt · 24/06/2009 16:51

Sorry to hear about the results, I still remember how bad I felt and it's many years ago now. It will get easier to cope. My peanut allergic child is a teenager now and doing work experience. It was a big comfort to me in the early days just to meet other people who were living with it and had survived .

The grades are a probability that your child with react, not an indication of the strngth of the reaction. No-one can tell you what the reactions will be like, only that he's quite likely to react. The scale runs up to 6 btw.

Although there are lots of helpful mums here www.peanutallergyuk.co.uk has a good food section and information on things like cosmetics that you may not think about (be careful with kisses). Mumsnet has better information on the desensitisation programme at Cambridge, there is hope he may not have to live with it always.

Some mums are great about parties, others may want you to take a plate. Birthday cake can be a problem as many people forget marzipan has nuts in it. Sainsburys have Bakin Boy cakes on offer at the moment, their own brand jaffa cakes are fine.

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bruffin · 24/06/2009 19:45

It's not the end of the world and your ds may grow out of some of it.
My Ds 's allergies started at 4 and although he is still allergic to most tree nuts and seeds he had grown out of peanut allergy by 12.
I never bothered taking food to parties and never had a problem at anyone elses house, he was always very good at asking.

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KathrynAustin · 25/06/2009 07:42

Thanks for the messages.

What upsets me is that this looks like a chronic, lifelong diagnosis and it'll always be at the back of my mind. I'm already worrying about when he's a teenager and I'm not around - he has a few pints goes out for a curry not realising nuts in the sauces etc etc.......

Having said that I feel at the moment we'll be fine. I checked out his favourite bread, crumpets, breadsticks etc in Sainsbury's last night and none contain nuts. Also Cadbury's website states all of their nut free chocolate bars too, so I'll stock up on those for treats.

It's made me realise how good food labeling is these days - I don't know ow Mums managed years ago when manufacturers weren't so allergy aware.

Need to tell nursery and school (he starts in September) today. I presume I'll need to provide EpiPen but they'll be trained how to give it? Can't imagine there won't be other children with allergies.

Thanks for the help!

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tinytalker · 25/06/2009 14:01

I know how you feel, my 11yr old has just been diagnosed with a Grade 4 hazelnut allergy which was a shock as we had no idea. She's had Epipen for years due to severe reactions to horses which also triggered her asthma and ended up needing an ambulance!
I know what you mean, thank god for good labelling now days.
Don't presume the school is clued up on Epipen, I ended up pretty much writing the schools policy and procedure for them and pushing for training.
The anaphylaxis campaign can help here.
I sell a range of allergy alert badges/stickers and kids Epipen pouches if you are interested. PM me.

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chloesmumtoo · 25/06/2009 16:36

My dd has the peanut allergy, you really do get used to it. She was diagnosed around 3 and has not had a major reaction since and now 7. We are very catious and always pack her up with food and attend parties with her. I agree with tinytalker it takes quite alot to clue everyone up on everything though. yes, labelling is alot better but still be careful of unknown brands. Dds nanny purchased a swiss roll the other day thinking it was safe with no allergy warning on but closer inspection she noticed it contained peanut oil in the ingredients. We always contact food companies checking up on our usual foods ect and nestle do lists routinely too which is handy.

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OrangeFish · 25/06/2009 20:35

"I'm already worrying about when he's a teenager and I'm not around - he has a few pints goes out for a curry not realising nuts in the sauces etc etc......."

Don't worry too much for that, they soon learn to take care of themselves and their friends also help. It surprised me how clued up children in DS's reception class were about keeping him safe. He was only diagnosed 3 years ago (he is six now) but it is a long time since it is almost impossible to make him eat anything that has not been checked by me or another "authorised" adult, actually... he sometimes makes people believe he is allergic to things he is not but doesn't feel like eating ... apparently he is now allergic to soup... any soup.

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stramash · 25/06/2009 21:37

No advice but my dd1 ( age 6 ) was diagnosed with peanut allergy a few months ago. I cried every night for a week. You are definitely not alone.
She's only had two reactions ; the most serious involved abdo pain, diarrhoea, coughing and a rash after eating a peanutty biscuit. The allergy clinic gave us anti histamine but no epi pen ( does anybody know when they do give out epipens by the way? - I would feel much more comfortable if we had one but didn't want to have the conversation in front of dd). Any way hijack - sorry...
We've just ordered one of these [www.icegems.co.uk/ for dd. She's very pleased with it and shows it to anybody who offers her a biscuit. Feels like something positive we can do when feeling a bit powerless and overwhelmed.
Good luck.

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stramash · 25/06/2009 21:41

Try again:
www.icegems.co.uk

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OrangeFish · 26/06/2009 03:57

Stamash, youshould have been given an epipen when the allergy was diagnosed, as there is no guarantee that next reaction will be the same as last one (unfortunately, with peanut they tend to escalate )

It is worth it going back to the GP/Paediatrician/Allergician and demand one.

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savoycabbage · 26/06/2009 04:46

My dd was 4 and 1/2 when she was diagnosed and I was really shocked too. I really thought that she wasn't allergic to peanuts but she was.

It is horrible at first. It took me about two hours to do the weekly shop the first time as you have to read every single packet, but you soon adjust your buying habits. I found Tesco a bit crap as they just seemed to have 'may contain traces' on EVERYTHING. M&S were surprisingly unhelpful too.

I got my dd a mediband bracelet which also helped to remind me. I carry a treat in my bag and have one in my glovebox at all times in case I need it.

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savoycabbage · 26/06/2009 04:49

mediband

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tatt · 26/06/2009 06:45

strash they don't always give out epipens if the reaction didn't affect breathing and the child doesn't have asthma. Did you see an allergy specialist or a peadiatrician? Most people have to see paediatricians as there are very few allergy consultants. Having seen both I would travel a long way to see the allergy consultant.

Sufficient unto the day ......OP take one day at a time. You have years to train your child and their friends in how to manage the allergy. It's also posible new treatments will be available in 10 years time.

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KathrynAustin · 26/06/2009 07:40

Thanks for the wristband links - DS has agreed that he'd wear one when we aren't around, at school etc - but only after I stressed that they are very boyish, and definitely not bracelets! He's going through a very anti-girl stage.....!

We got two Epi-Pens (JR) on the day of diagnosis. I imagine if you are at risk of anaphylaxis, as in the case with a nut allergy, you should be given one at diagnosis? Makes sense.

Any idea what waiting times to be seen in "allergy clinic" should be?

E xxx

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stramash · 26/06/2009 08:23

Seen at a paediatric allergy clinic. Can't fault them - everything was done in one stop - doctor, allelrgy nurse, blood test, skin tests. dietician appointment, written plan, antihistamines.
I just wish I'd pressed them on the reasoning about the epipen.
I suspect it's because as you say tatt she doesn't have asthma and didn't have any airway compromise or breathing problems in either reaction ( although she did cough for half an hour...)
Might get back in touch and go through the epipen thing with them again.

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brimfull · 26/06/2009 08:34

Hi,I will second everything already said.It is such a shock at the beginning.
Ds has been wearing the medi-bracelet since he was 2,he's 6.5 now and it has helped him to explain his allergies to people who ask about it,especially other curious children so a very beneficial thing .

Have a look at the anaphylaxis campaigns website and I would recommend joining.They do fab workshops for parents .

Sorry you are going through this but it honestly does get easier with time.

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cuppachar · 26/06/2009 08:53

The policy on epipens varies by area. We got presecribed them for DD (peanut/egg/milk allergy) in London, but in Bristol for example they only prescribe them if the child has had a reaction that involved breathing problems or asthma (I've seen this policy in writing).

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cuppachar · 26/06/2009 08:58

I should add.... I was so upset by DD's diagnosis at 8 months, but just over a year on I can honestly say I don't worry about it at all anymore, not because I've become blase about it, but because it's become 2nd nature.

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tatt · 26/06/2009 21:02

This website has sports bands that might be suitable for a boy? They come in different lengths so might be OK? www.universalmedicalid.com/mkt_uk/category.php?scrollcat=brac_sport&pullid=29&mastercategory=bracele ts&bbscrollerpage=6

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keresley · 26/06/2009 21:20

see here www.mumsnet.com/Talk/allergies/736163-Severe-nut-allergy for more nut allery tips

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KathrynAustin · 02/07/2009 09:15

Thanks for the ongoing support - it's really appreciated.

I've spoken to the new school and they seem very clued up, no school nurse but teachers trained to use Epi-Pen and they assure me that it's a completely nut-free school!

We've ordered a couple of medi-alert bands too which will put me at ease when I'm not with him.

I have to say I'm amazed at how unfazed DS is being, I'm so proud of him. It turns out that a couple of his favourite treats are now unsuitable because some packets may contain nuts (I guess we've been lucky with them so far), he has accepted this completely without once saying "This is unfair".

Thanks again!

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