Just diagnosed with a severe peanut allergy

[jellybrains]

My 3 year old has just been diagnosed with a severe peanut allergy and is also mildly allergic to most other nuts. How do I play this she has been eating almost everything until now and now I am freaked out and checking everything for nuts. There has been lack of support both from my GP and health visitot, is this normally the case?

[giraffescantdancethetango]

hiya, i have a lot of experience with this so will help you where i can

do you have an epipen/syringe?
id suggest you join the anaphylaxis campagn they send you newsletters etc and update with any foods that have changed thier status and things, plus all relevant info. very useful.

any things you need advice on nut free versions asap?

[giraffescantdancethetango]

would expect gp to refer to an allergy clinic and for them to be more helpful. if this hasnt happened then thats rubbish

[GivePeasAChance]

My DS is 6 and we are just waiting for the test after violent reaction to crunchy nut cornflakes (not sure we need it?). I really have no idea what the f I am doing with it all, and even though he has already had anaphylaxia, I am still none the wiser and keep getting a "relax" attitude from people. But I thought he was dead so it's pretty hard to relax.

There is nothing like this in the family and so difficult to get my head round it. Lack of support would be true here too - I feel like I have been made out to be a paranoid middle class helicopter parent with delusions of allergies "to explain behaviour". It's wank.

[ilovemydog]

Oh, very interesting giraffes...

I have a peanut allergy too (epipen in tow)

Is there a link/web site?

Also, is it true that peanut oil is OK for peanut allergies? Sounds odd, I know, but am assured is true...

[giraffescantdancethetango]

il try get a link 2 mins

[giraffescantdancethetango]

www.anaphylaxis.org.uk/

it might have all the info from the newsletter online - not entirely sure about that (its my employer who gets the newsletter)

i have had wonderful anaphylaxis training one on one from a nurse at a childrens hosp (i was the childs nanny) the nurse also goes in to nurseries and schools and trains the staff. have you been offered this?

[ilovemydog]

Thanks so much!

very comprehensive list - all I've been told is that DD, due to my allergies (peanuts, latex, etc) she should avoid nuts until she's 5.

I can't see it being a major problem. It's not as if she will miss a peanut butter sandwich.

[desperatehousewifetoo]

I'm sorry your dd has had this diagnosis jellybrains.

My ds was diagnosed with peanut, hazlenut and egg (as well as house dust and some animal) allergies when he was about 2and a half. He has an epi-pen.

It was scary to begin with but I would say that a nut allergy is much easier to cope with than egg, ime. Most people/restaurant staff understand the seriousness of nut allergy but egg allergy is much more difficult.

I think once you have got used to it, you won't find it too difficult to cope with.

Over the next year or so, your dd will start to be able to police it herself and all her friends will help. My ds' friends all remind their parents at parties and when he goes for tea. Most parents are very happy to cater for him and even bring him an alternative when they take birthday cake into school.

I do hope that your dd outgrows her allergies but in the meantime good luck with getting to grips with it.

[jellybrains]

Thanks for all your advice. I have epipens but was just given a prescription with no advice about anaphylactic shcok or diet etc. I have got an appointment to see my gp next week and have a list of questions. Will certainly look at the website giraffescantdance recommended and I will ask about the allergy clinic plus my long list of questions.

[tatt]

One of my children has a peanut allergy and carries epipens. The Anaphylaxis campaign are a better source of advice than most gps (and even some consultants). You could also visit www.peanutallergyuk.co.uk - may see you there.

Refined peanut oil is not generally a problem as most of the allergens are removed but a few people do react to it.

Givepeasachance the testing helps to get other people to take it seriously and you may discover other things are a problem. You may, if you're lucky, even get some decent advice. Some people can't get epipens without tests (or even with them).

[jellybrains]

My other dd is 7 months old should I be getting her tested for nut allergies too?

[giraffescantdancethetango]

jelly i would keep her on a nut free diet (ie same new diet as other dc will have now) and then see about testing.

[nappyaddict]

how did you find out if she has been eating everything with no reaction?i thought they only did a test if it was a family allergy.

[jellybrains]

nappyaddict - we had 2 incidences when on the first she was handing round a bowl of peanuts at a party and she came up with a huge rash all over her face and back, the second time my husband had been earing peanuts and then touched her face and the same happened again. Took her to the gp where they told me to give piriton if it happened again (duh) but I insisted on a blood test which proved to be worthwhile.

[tatt]

at 7 months its fairly easy to keep a child away from nuts. Testing is unpleasant for such a young child. I assume repeat testing will be arranged for your 3 year old after age 5 to see if they have outgrown the allergy. You can ask about testing your other child then.

[bagofhammers]

My ds's allergy doctor said that only 7% of siblings are likely to have a peanut allergy too. My dd doesn't have any allergies. At 3yo it is not to bad as you still have control over what he eats. You will find cereal etc. that you can have. Cadburys and McVities websites are good for giving lists of things that are nut free. I carry some chocolate in my bag that ds can have if we go somewhere and he can't have a pudding. I also carry a small bottle with piriton in my bag but I'm trying to get an epipen.

[bagofhammers]

There is some very encouraging research about possible treatments for nut allergies atm.

[Chandra]

DS is also allergic to peanuts (between many other things). I have to say that keeping him away of nuts is the easiest thing to do in his complex diet: everything is labeled and most people take the allergy seriously.

Having said that, I had a bad time when he was first diagnosed, I spent weeks trying to find things he could eat or not (mostly due to his other allergies). At the end it becomes second nature, reading labels will become a doodle and you would find yourself so well prepared for every ocasion.

In terms of what to eat or not, this is in a card that I keep in DS medical kit to give to persons who care for him:

FOODS TO AVOID:

Peanuts and other nuts:
Normally specified in the package. DS is OK with ?may contain traces of nuts?, but not with ?manufactured in a factory that handles nuts?, not with ?manufactured in equipment/line that it is used for/handles peanuts/nuts? (and similar). Please also avoid anything with the word ARACHIS or nuts in it. And, as DS is slightly sensitive to sesame seeds too, please avoid humous. DS can also develop an allergic reaction by skin contact. (adapt as you need to)

IN CASE OF ALLERGIC REACTION:

Small rash around the lips
Please ignore

Rash that spreads fast and covers a wider area. Puffy eyes, puffed face
Piriton Syrup, as directed in the bottle: 2.5 ml every 4 hrs. and ensure to wash DS? hands and face. Watch for peanuts/nuts, if contact with them is suspected monitor condition closely.

Hayfever like nose symptoms.
These may occur after contact with animals or dust, please give him 2.5 ml of Piriton Syrup and ensure to wash DS? hands and face.

Wheezing and breathing difficulties
Ventolin inhaler: Give a puff via spacer and count until 30 before removing the mask. Wait 60 seconds and repeat if wheezing has not stopped. Doctor has advised, that in extreme circumstances, DS can have up to 8 puffs and an ambulance needs to be called.

Wheezing and breathing difficulties PLUS puffyness in the face, condition deteriorating rapidly, collapse.
EMERGENCY Contact someone in the school who has received training to use an Epipen (or follow advice about how to use them available in DS? kit), and RING AN AMBULANCE (999) Mention ANAPHYLAXIS when you ring them. Try to keep him in a sitting position to facilitate breathing.
There are a couple of EPIPENs in DS? medicine box.

Contact numbers:
Mother's Mobile XXXXXXXX
Father's Mobile XXXXXXXX
NHS Direct: 0845 46 47
Emergency services: 999
GP: XXXXXXXXXXX(XXX Surgery Phone number)

[Mind you, my son have so many allergies I don't want to bore you with them so if you decide to use the above please adapt as required as reactions to peanuts can vary.

[jellybrains]

This is all really helpful thanks. Wow what a great forum this is, I already feel much better about how to handle this.

[whenwillisleepagain]

Hiya, I am finding this thread really helpful too. DS is 21 months and had first anaphylactic reaction 3 weeks ago. I kind of expected it - tried to enrol him on LEAP study (peanut allergy / eczema) at ST Thomas' last year when he was 5 months, but they tested hin and said he was allergic to peanut and sesame. We got epipens and after he started nursery I made sure staff there got training (useful video from Anaphylaxis Campaign for nursery & school staff). This reaction happened at nursery and ambulance staff said they dealt with it really well, so thank goodness we talked to them about being prepared. I got there 20 mins later and he was very puffy faced but epipen had worked. No obvious cause for it, as he was eating something he'd had before, but some seasoning mix was suggested as most likely culprit, and I am now wondering about balance between sensible precautions and projecting my own anxieties onto DS. There is more useful stuff on LEAP Study site, including v positive story from Independent about advances in nut allergy treatments. Good luck.

[savoycabbage]

Hi, my dd is 4 and I gave her peanuts and other nuts when she was 1 and she had no reaction. Then she had a skin reaction to some peanut butter she touched. We weren't all that worried as she has eaten peanuts before, lots of times. We had a challenge test and she is allergic to peanuts and mildly allergic to some other tree nuts.

I have found it a lot easier to avoid peanuts that I thought it was going to be at first. Once you look at all of the manufacurers websites and find out what you can and can't have you can just change what you buy. Sad though it is they get used to not being able to eat everything.

My dd is going to school soon so I got one of these bracelets just to remind her, me and the school.

I really panicked at first. I was panicked about the danger, I was worried about how difficult it was going to be and how she was going to cope - but as desperate said, people at least do take it a bit more seriously than other allergies.

I do think that some people just think you are a bit of a control freak though.

[chunkybutt]

hi everyone this is my first time on the website, ive just been reading all your useful messages on nut allergies. ive only recently found out that my son who is two is allergic to peanuts, most other nuts, beans, peas, pineapple, orange and a few more i cant think of but its all written down. i just got my epipens yesterday my hospital were really useful, they made me watch a video and gave me some really helpful information. my son also has asthma and eczema too. i found out that a nut is a pulse so children with nut allergies may also react to beans, peas, chickpeas etc.peanuts are also found in palmlive soap, oilatum soap, oilatum emulsifying ointment and various other creams too. colgate blue minty gel toothpaste and ultrabrite toothpaste contains peanut too. at the moment im just getting to grips with what food he can and cannot have. im trying my best to give him home cooked food then i know there is no nuts in there but im not the worlds greatest cook and i dont know many recipes either so any suggestions that would be great. cheers xx

[tatt]

well its certainly not unusual, unfortunately. Most people join the Anaphylaxis Campaign initially. You do need to check everything but it will become second nature. if you are near Cambridge check out threads about the study at Addenbrookes.