Quality of life with a peanut allergy

[Perdida]

My DS (13 months old) was just diagnosed with a peanut allergy via skin prick test. We suspected the allergy after he got some small, flat red marks around his mouth when we tried introducing peanut butter at 7 months and were waiting for the allergist appt since April.

I am devastated. I had convinced myself that the marks were just a contact rash. Even the allergists were surprised when the skin prick test was positive, since his initial reaction didn’t appear to be hives. We are due to come back in a year to test again and they said that the allergy could improve by then, and possibly disappear (though I know this is rare), or it could get worse. He doesn’t have any tree nut allergies, so they suggested regularly feeding him other nut butters.

I was hoping to hear from mums who have or know kids with peanut allergies. Is it possible to have a relatively mild peanut allergy? My DP has a prawn allergy and it doesn’t affect his daily life very much. Beyond the risk to DS’s safety, what really breaks my heart is the thought of him having a lower quality of life, feeling left out and different, and developing anxiety and low self-confidence. How have your children coped with having an allergy?

Any insights would be much appreciated! I am feeling very unsupported and anxious. We waited ages for our allergist appt, my GP has not been helpful and I’m not sure where to turn.

My now 18 year old DS has multiple allergies including peanuts, mostly discovered when he was between 6 months and 2 years old. I haven't got much to add to what others have said but yes, it's daunting at first but you will get used to it and it becomes part of life that you just deal with automatically. His allergies have never stopped my DS doing anything or going anywhere he wanted to. Nuts and peanuts are, as a PP said, kind of "easier" than some other allergies in the sense that most people know about them and understand they are serious. I have never had anyone question me when I have said that DS is allergic to peanuts whereas people obviously don't believe some of his rarer allergies which does make me anxious on occasion.
One thing I don't think anyone has mentioned as yet is that peanuts are not actually nuts in the botanical sense - they are legumes. Hence there is a higher possibility of being allergic to other legumes like lentils, peas, chickpeas etc. It's not guaranteed of course and lots of people are allergic to peanuts and fine with all other legumes but it's worth watching carefully for other reactions especially if introducing new foods from the same group.

I have a number of allergies, including to peanuts.

Of all the things I'm allergic to, peanuts are by far the easiest to avoid as people are very aware and believe in peanut allergies. My biggest issue with peanuts is that I react if I sit on a seat in a pub where peanuts have been eaten but this shouldn't be an issue for your DS if his allergy is so mild.

It's worth being aware that chopped peanuts are prevalent in Thai restaurants so I avoid eating Thai food altogether.

Ds has a peanut allergy. Was diagnosed at 8 months after reaction and blood tests ( not in uk so they don’t do prick tests here anymore).
Hes had blood test controls every 6 months the last three years, and we are now under allergy specialist to do a peanut challenge in the hospital next month as it looks like he may have outgrown it or severity at least.
At the moment he has two epipens, allergy drops and suppository medication as backup

We avoid all Asian restaurants as they use peanuts a lot in oils and ingredients.

interesting! I will ask my GP about this too. Thanks for sharing.

Our paediatrician said the main reason for blood tests v skin tests is skin tests will only show up allergens they have already been exposed to. But blood tests show everything. Ie at 8months we tried Ds peanut and he reacted. Blood test after showed he was also allergic to hazelnut ( which wouldn’t have shown on skin test as he hadn’t ever eaten hazelnut at 8 months).
It also gives an accurate allergy number so they can monitor clearly not just eye looking at skin. For Ds to be eligible to have peanut testing of allergy has reduced it had to be less than 14 on last test.

Since DS is only one, the allergist said that it's easy enough to control his peanut intake, so the advice was to avoid peanuts and 'may contain' altogether and feed him lots of tree nut butters. We will have another appointment in a year to re-test.

I hadn't heard about rubbing a 'may contain' food on the skin first. Will check with our allergist, that could be useful.

I hope the cashew allergy improves after your DD does the challenge. I was surprised to see that they're often in tortellini and pesto, thought that was more pine nuts.

My DS also has a mild peanut allergy.

Similarly he reacted as a toddler to peanut butter on toast with hives all over his body. He got an 'itchy tongue' when he had a bit of a cereal bar containing peanuts. Each time piriton relieved the symptoms.

I asked the GP how we should manage it, or if there's anything we should do and she simply said try reintroducing to get his body used to it which is easier said than done now as DS simply refuses to try! Fair enough!
Obviously I don't recommend you doing this without guidance from your medical professional.

We hoped he would outgrow it, but unfortunately last year at aged 9 his face swelled up after getting a peanut piece in his eye from a bird feeder (don't ask 🙄😂). After taking him to the walk in, he was fine after antihistamine.

He lives a normal life and we happily eat peanuts around him. He's sensible enough to check packaging or speaking up at his friends houses etc.

There is absolutely no reaction to other nuts and will happily graze through mounds of mixed nuts.

thank you! I didn't think about other legumes, will definitely be extra cautious when introducing. I'm happy to hear your DS hasn't been held back by his allergies 😊So frustrating that some allergies aren't taken as seriously!

It's worth asking if your DS is a candidate for palforzia.

Honestly, I doubt it will affect him in any way, apart from not being able to eat peanut M&Ms and needing to make sure he reads packets.

Children are such picky eaters so often that I don't imagine any of the other kids will turn a hair at him not eating something.

Are you in the UK? I feel really anxious just reading that the GP advised that kind of management. Allergies are not their specialism at all. I hope you were referred to an allergy consultant at some point?

DD reacted massively to skin tests for Brazil nuts, which she had never otherwise been exposed to, so I’m not sure this is correct info. To this day she’s never eaten a Brazil nut. Fortunately they’re easy to avoid.

@ZZTopGuitarSolo - yes but skin tests are also limited. They test for say 10-20 ish allergies. So if they hadn’t included Brazil nut then that’s the problem as you wouldn’t know. Where as a blood test can test for the ones you think allergic but also hundreds of others.
Also skin test involves putting some of that allergy on skin, for people highly allergic from even skin exposure it can be really dangerous and cause anathylatic shock ie if your son was highly allergic to brazils even from touching, a skin test could trigger. Hence why blood tests a better route. They just cost more, so nhs more likely to use skin.

My DP has a peanut allergy and also some other nuts but not all nuts. He enjoys the other nuts, we check ingredients for the ones he cannot eat, but otherwise he has a normal life. Like your DC, his reaction is short of anaphylaxis (or at least, he's stopped eating before it came to that) - he will need antihistamines and his inhaler, will feel nauseous and will often throw up and need to lie down for the rest of the day. In the 8 years we've been together, he's had three reactions. It's relatively easy for him to manage here, it's in Europe he's had more issues; one time he asked which nuts but we suspect there was cross-contamination between nuts, or they came from a mixed bag, or the person simply didn't understand the difference or importance, and the second time we think they used walnuts as part of the seasoning on a dish which was otherwise safe and he had simply not contemplated would be an issue so hadn't mentioned the allergy.

Yes in the U.K. and no referral to an allergy specialist.
this was several years ago now, and from memory it was a question i raised following an appointment for something else with him. Perhaps I was pushing my 5 minute time slot!

I’m dealing with lots of allergies / intolerances with my two year old but my dr is terrible . I want to pay private for a skin prick test but don’t know where to turn to. Can anyone help?

I would start by contacting your local private hospital. Certainly the big companies like Nuffield, Spire, BUPA hospitals etc often provide this service and may be accessible without a referral from your GP. I've recently got an appointment with a surgeon privately without going through my GP. There's usually a "contact us" button on their websites or a phone number for general enquiries.
Hope you get the answers you need and your DC is feeling better soon.

My DS15 has had a peanut allergy since he was 2. A few years ago, we took him to an allergy doctor in the USA for oral immunotherapy. He can now eat peanuts without having a reaction, but he has to eat them most days. There are definitely more peanuts around here (think open boxes of peanuts in supermarkets, peanut eating competitions at school), so that's why we got him treated. Before treatment, we travelled extensively and he never had a reaction.

As your DC is so young, they may outgrow their allergy. Or you could look into oral immunotherapy (OIT). If you start OIT at a young age, there's a very good chance that your baby will grow out of it.

My DD is 14yo and has a peanut allergy. It hasn't stopped her doing much. We don't eat in restaurants that use peanuts and all of us in the family also avoid peanuts due to the risk of cross contamination. The biggest issue for us (genuinely) has been that on holiday we have to make sure we only buy ice-cream from shops that don't sell peanut ice-cream. In parts of Croatia this was surprisingly difficult.. I think it might limit some travel opportunities when she is older too. I'd be alarmed about her visiting Thailand for example.

But on the whole, it's completely manageable. You just get used to checking all food very carefully.

The only thing I would add is allergies can get worse over time with each accidental exposure. So a mild and just skin related reactions as a baby can be anaphylactic later on - my experience for peanut and other food allergies.

I also have a relatively mild peanut allergy since childhood. It can be just that. If I eat something with peanuts or oil I do get uncomfortable instantly, itching mouth, swollen tongue and lips that look like a terrible filler malfunction, and vomiting but thankfully, in my early 50s, have never yet needed medical attention. It can be manageable. Like others have said I'm cautious with Thai, Indian and Chinese food (but still eat them after checking with a tiny taste) but fine with 99% of things that say "may contain nuts" and enjoy eating all other (tree) nuts.

However, until you are sure of the degree of DC's allergy be very cautious as is of course your instinct. But just to say it might be very much ok.

Thank you so much!

Hi All,

OP here. I wanted to post an update in case it's of interest to anyone who comes across this thread. DS's second skin prick test, last November, was also positive. I told the allergist that I had enquired about the Natasha Clinical Trial and she was very encouraging about joining.

On our screening call, the researcher suggested that we start with the Improved Diagnostics in Food Allergy study, which is testing a nasal spray containing a tiny amount of peanut, as DS's skin prick results were just at the positive level (wheal size of 4mm) and he had never had a very obvious reaction – only spots around his mouth that disappeared quickly. When we went in for testing, amazingly, DS did not have a wheal for peanut allergy on his skin prick test. He also did the nasal spray tests with no reaction. We moved on to the food challenge and he had a mild reaction on the third dose, after about 13 peanuts, and the allergist said that he is likely outgrowing his allergy and will have no reaction soon. We were given peanut puffs to take home – DS will eat these four times per week, to ensure that he continues to outgrow his allergy. The amount that he will eat at home is far less than what he ate in the hospital, before his reaction, and we will be in touch with the clinical team throughout this process.

I don't mean to give false hope through this story – I know that outgrowing peanut allergies is still relatively rare and DS's allergy was likely always mild, but I hope it's helpful to some to read about a positive outcome. I'm so glad that I enquired about the trials – we received a level of attention and in-depth testing that we wouldn't have found through the NHS, at least in our area.

oh my gosh i just saw this. i hate to break it to you but tongue swelling is a sign of anaphylaxis. You ought to have an auto-injector on you, there is no guarantee that future reactions will be mild.

there is no such thing as a mild allergy anyway. allergic reactions can be erratic.

that's fantastic- very happy for you:)