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If they aren't anaphylactic it doesn't count
10

MoederBok123 · 01/07/2022 12:30

Hello All,

Anyone face the frustration of getting people to take your child's allergies seriously if exposure doesn't tend to result in anaphylaxis? Recently, my son faced 7 exposures in one term. I got so angry. Another child with a nut allergy has never faced such exposures from this particular place. Most people don't voice that they don't take non-anaphylactic allergies seriously but some have been bold enough to state that. My view is, if it makes the child sick in any way, shape, or form, it matters. End of.
Yesterday we saw my son's paediatrician again and he's requested that all egg be removed from my son's diet because his gastric system's functioning is still not improving. We have managed the egg ladder up to pancakes. It's taken 7 years to get to this point. He still cannot have any gluten (removed at approximately 1y.o) nor dairy (removed at 4m.o including my breast milk 😢). Soya he can have in moderation because it now tends to cause more fluctuance than pain, rashes, vomiting and other. So, my son can decide for himself if he is willing to face the effects and consider his surroundings.

Anyway, I digress. The Paediatrician was absolutely horrified about how people treat my son's non-anaphylactic allergies and pointed out that people, like celiac, can face slow and painful deaths at the hands of gluten if exposed over long periods of time. He raved, as I often have, that just because others cannot see the reactions doesn't mean they aren't there. I realised at this point that my frustrations are valid and whilst others like to treat my concerns over my son's health as an annoyance, his allergies are important to consider and adhere to without discrimination.
For a long time, I have avoided going out because of the reactions we get about my son's allergies. Frankly, after speaking to the paediatrician yesterday I realise that this is so not fair on my son. Why should he not be treated normally and experience normal outings because of other people's ignorance. Wherever you go, you can usually find vegan alternatives so why not allergies? You should see the smile on his face when, on VERY rare occasions chefs come out to make him an allergy appropriate kids meal. I mean, he is a kid after all so why not treat him as one and allow him a child's meal with the usually accompanying toy, desert or drink? He loves it and always wants to go back to that place because of how they made him feel.

I digress again! Does anyone else find if difficult to express the importance of respecting non-anaphylactic allergies to the world? Restaurants, childcare, schools, you name it. Any advice on quick analogies or sentences that can help express their importance while being presented with allergy folders and rolled eyes when placing an order, or being sighed at when expressing your upset over your child being exposed again.

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Notbluepeter · 01/07/2022 13:17

I'm sorry this sounds rage inducing. My son has an egg allergy. It will subside with steroids so he doesn't need an epipen. But it's still a massive reaction each time and trip to a&e and we don't take it lightly! Nursery are great about it. But restaurants are terrible. Multiple times I've deliberately ordered the same dish as my DS, something supposedly egg free, which has blantly just had the noodles/cake/ mayo element removed or scrapped off.
I assume there are so many people claiming intolerances that the serving staff are desensitised or something.

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Soapboxqueen · 01/07/2022 13:28

Tbh I think it's because people can just about cope with the idea of anaphylaxis and dump everything else into the 'fad' pile.

I have intolerances so while painful if I eat certain things, it won't kill me and it won't have any long term effects past a few days. However, people tend to assume I'm just being picky.

I also think some people end up saying they have allergies because people don't take intolerances seriously which doesn't help people with actual allergies or intolerances.

You're right OP it isn't fair but it's going to take a lot more education of the general public for things to change

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MoederBok123 · 02/07/2022 10:58

I find it infuriating. My son gets so sick from exposure that he lands up in agony and unable to hold down food or drink for days, which has also lead to hospital admission and being placed on drips, with a variety of medications. His skin flares up, burning and itching all in one. It's nothing to take lightly. The place (child specialists) where he was exposed 7 times in 1 term, I had to put a document together with photographic evidence of his bleeding skin and him on a drip with monitors strapped to him. I went for the image of him at 4 weeks old because its a little bit more shocking to see such a small child hooked up to machines. Now days, I feel like carrying that around with me to show "this is what will happen to my son if you think his allergies are not to be taken seriously", but I know my son will be very upset with me if I do that. He's picked up a complex about it all now.
It's so tough, we want to live normal lives but keeping them safe is difficult in a world where people don't take it seriously. Like with your son @Notbluepeter .

@Soapboxqueen I struggle with certain ingredients too and have my whole life. It wasn't until I cut it all out to try continue with breastfeeding that I realised how much better my body functioned without certain ingredients. I'd gotten to a point where I kind of just thought permanent abdominal pain, the feeling like your stomach wants to explode, flared and angry skin, with unbelievable fatigue and headaches were normal. Now I am pretty good at managing it and knowing which symptoms to expect and how severely, if I face certain exposures and quantities.
Generally I don't tell the restaurants about my own 'intolerances' because I know it's seen as a fad with adults. I have the added advantage of receiving my son's menu when he is with me which makes it a little easier for me personally. Whilst I have been hospitalised many times over the years because of it, it was mostly before all of this was known. Now, for me I know it is very much dependant on level of exposure. My son on the other hand is still very sensitive, particularly to gluten and dairy, so he gets very sick rather quickly from very little exposure.

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FairyBatman · 02/07/2022 11:03

Nowhere should be downplaying your sons allergies just because they don’t cause anaphylaxis. Whatever the childcare setting is, you need to have a strong word with them about this, and if in the UK I would suggest reporting them to your local environmental health team who monitor food safety. There’s no way that there should be so much cross contamination.

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SnowWhitesSM · 02/07/2022 11:09

It must be really hard for him OP. How sad to think getting a kids meal can give him so much pleasure because it's not his norm.

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minipie · 02/07/2022 11:16

Are you sure it’s the case that they’re not taken as seriously? It could be that the school, restaurant etc takes his allergies just as seriously but it’s just much, much, much harder to exclude all egg, dairy and gluten, compared with excluding nuts or sesame. He’s allergic to much more stuff, therefore there are going to be more exposures?

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AnnaMagnani · 02/07/2022 11:34

This gives me the rage.

I've been out with adults who were definitely in the 'fad' category but the chef came out, discussed their many issues with them and came up with something without batting an eyelid. If this can happen in our village pub, why not the norm?

There is no way anyone can know if the customer is talking about a genuine allergy or a dislike. Basic food training is that you therefore provide them food that is safe for them to eat. Customer service is that you do it with a smile.

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ShadowoftheFall · 02/07/2022 12:46

I’m surprised to hear of your difficulties to be honest. I have an egg, dairy, soy allergic child and eat out for lunch or dinner around 2 or 3 times a week, and have always found waiting and kitchen staff very amenable to finding something that works for us. This is a very rural out of the way area, so not a cosmopolitan city.
Our nursery have been brilliant as well, with only one incident, when my DC accidentally picked up someone else’s cup and had a mouthful of dairy milk, which they didn’t swallow.
I find people are generally willing to be guided by what you are saying about your child’s medical situation.

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MrsAvocet · 02/07/2022 14:09

I can empathise. My son has a mixture of IgE and non IgE mediated allergies and we find it hard to get people to understand/believe in the non IgE ones too. Yes, the non IgE ones aren't going to kill him instantly but they have led to hospitalisation so definitely can't be ignored.
We don't bother trying to explain in restaurants etc actually. We just say he's allergic and leave it at that. Since there's an EpiPen on the table everyone assumes they are all anaphylactic reactions and we don't say any different. It's frustrating for DS as his non IgE reactions are very much dose dependent so he could actually eat some things with small amounts of cooked egg or dairy from time to time but it's too confusing for people and creates risk to try to explain all the detail. Even his grandparents haven't grasped the situation and its nearly 15 years since he was diagnosed. So outside home he sticks to 100% avoidance for safety.

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MoederBok123 · 04/07/2022 17:19

@FairyBatman I escalated to most senior staff member and their external caterers. Lead from the caterers flat out denied exposure stemming from them several times even though on one occasion the yoghurt pot packaged in the food box, by them, clearly stated it was cow's milk yoghurt.


@minipie Yes, many of the staff were not taking it seriously. In a meeting I called with all staff who interact with my son in any way, it was admitted that they took little interest in allergies and were ill-informed about non-anaphylactic ones.


@SnowWhitesSM It's amazing how happy he gets. We had another positive experience yesterday at a garden centre café where the manager opened another till so that he could take his time with us and ensure that my son had the same kid's box experiences as his group of friends. My son was super please and so was I.

@AnnaMagnani That is exactly how I feel about it. I wouldn't mind the odd experience where we get the sighs and eye rolls, I'd just leave. But because it happens to us most of the time we stopped going out. Being braver now and facing that world a bit more. Also don't get as upset by restaurants as I used to.

@ShadowoftheFall Gosh its good to hear that you have had such great experiences with your child dining out. You say you are rural, do you often go to the same places? Admittedly, our dining experiences tend to be in built up areas where restaurants are generally busy with a constant flow.


@MrsAvocet , your message made me well up. Very rare that I've heard of people experiencing both sides of the coin. It made me see that whilst I'm sensitive to the topic, I'm not imagining the intolerance to people with non-IgE allergies. I wonder if the visual aid of the presence EpiPen shocks people into taking it seriously with your child too. A bit similar to the visual aid I made with photos of my son at his worst that shocked the staff at the childcare setting. They certainly take it far more seriously now and gasped at the sight of it during our meeting. Unfortunately my son has lost trust now and flat out refuses any snacks or food activities unless provided by me, which I obviously have no problem doing. I do get comments though about how i should not be reinforcing his distrust in them.

Writing this, I can't help but wonder if the problem lies with sufferers not shouting loud enough to raise awareness. There are so many societies and groups raising tolerance and awareness for equality in other areas now days. I've never been of the protesting or shout out your frustrations type but I can see it seems to work.

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