This podcast episode explores the intricate realities of living with childhood allergies, emphasizing the necessity for awareness and understanding. We hear into the powerful narratives of parents navigating the challenges posed by allergies, revealing the emotional landscape that accompanies these medical conditions. The discussions illuminate not only the day-to-day difficulties faced by children with allergies, but how their families, including their siblings, support them. We reflect on the importance of effective communication between parents, educators, and medical professionals to build a supportive environment for children with severe allergies. The conversation gives a strong message that vigilance, compassion, and education can significantly enhance the lives of those managing allergies in a world with hidden risks.

Takeaways:

• The podcast emphasizes the importance of awareness and education for children with allergies and those surrounding them.
• Parents share their experiences navigating the complexities of managing childhood allergies.
• Open communication with teachers and caregivers is crucial for ensuring child safety at school.
• The discussion highlights the emotional challenges faced by children with allergies in social situations.

The opinions expressed in this podcast are those of the parents of students with allergies and are presented for informational purposes only. They do not reflect the position of Ackworth School as a body. Ackworth School does not provide any medical advice, diagnosis or treatment.

Always seek the guidance of your physician or other qualified healthcare provider with any questions you might have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard in this podcast.

I was really clear with Amanda that I feel doing this and showing that we're a school that understands allergies and that has a plan around allergies and has kids here who have those allergies.

I know that if I'd come and looked around a school and they had said oh, we've just done a podcast actually about couple of kids within school who've got allergies and their, their families' experiences of it, to know that it's understood by the school is massive.

In this episode we'll be shining a light on life with childhood allergies.

This conversation comes straight from the heart shared by parents who navigate the realities of the issues that face children with allergies every single day.

Their lived experiences, which are full of challenge, resilience and hope, offer an honest and valuable insight into what it really means to keep a child safe in a world that's filled with hidden risks.

We also reflect on what this can feel like from a child's perspective, wanting to join in freely, but having to think carefully about food, about play and everyday moments that other children never need to consider. Understanding that emotional landscape is just as important as understanding the medical realities.

These insights are a reminder that awareness, compassion and good communication make a huge difference. We're grateful to our wonderful parents for opening up and helping us all to understand a little bit more.

So I am Lou. I've got two boys in Coram House. My younger son has got severe allergies and he's just starting in reception this time.

So he went to the nursery at Ackworth School and that's when we found out about his allergies. So they were very much along the journey with me and were amazing at working alongside me as we kind of got to learn about it.

But it did feel like quite a big jump from that small, very enclosed environment of nursery where I knew every member of staff and I pretty much knew a lot of the parents there as well. So feeling that everybody...I could communicate with everybody, I had an element of control over that environment.

Then the shift into reception at Coram House felt like a big leap for me and I felt like a lot of my own anxieties really crept up. And that's when I approached Amanda and said, would it be all right if I came in and just had a conversation with you, just so I feel I've done everything to make you aware of Rueben's allergies, so you know what to possibly expect? And also just to settle my own anxieties about how you approach that at school?

And so we had a really great conversation, actually.

And after that, Amanda said to me, would you consider coming in, doing a podcast? And I said, oh, my goodness, absolutely not. But very quickly realized it's an important thing. It's something that the whole.

The story, to hear it from mine and Jo's perspective is so much more real than somebody else perhaps talking about the subject. So, yeah, that's how we've ended up here today. That's how I'm here.

So I'm Jo and I've got two girls at Coram House and Rosie is five years old in year one, and she has had chronic eczema and allergies since she was born.

So the allergies, we didn't realise that she had any allergies until she was about six months old and we started weaning her and we gave her scrambled eggs and she just started with hives around her mouth and she was really irritable, scratching, crying. So then we went to see an allergy doctor and then that was the sort of pathway that we learned that there was other things that she was allergic to.

So Rosie is allergic to nuts and sesame seed, and we didn't learn that until trying to think. Now she was in year reception year, I think. So it was a little bit later on in life.

Rosie had eaten Nutella chocolate spread probably once a week as a treat and had no problems with it for the first three or four years of her life.

And then all of a sudden she had pancakes and Nutella one weekend and she got the hives around her mouth and I thought, I wonder if that is because of the nuts, the hazelnuts in the spread. And it was just hives at that point. So I didn't think too much of it.

Then.

I think the next time that she had the spread, it happened again, but she was really itchy and it exacerbated her eczema all over her body. So then we went to see Dr. Hodge, the allergy doctor in Leeds, and he tested for nuts and sesame as well. And it came back as A positive result. So.

So we've just been told to avoid all nuts. And she now has been prescribed EpiPens, so we carry those with us. I think allergies can develop at any time in your life, so I've read. So, yeah.

Now Rosie has daily a shot of.

Does she have cetirizine?

Cetirizine, yeah, the antihistamine medication. Just because she suffers with her eczema as well.

And we did have one instance where she was given a cashew nut and she was instantly holding onto her throat, really irritable, crying. And I panicked because it's the first time that I've seen a real reaction where it could be compromising her airway.

So I rang the doctor, doctor surgery, and they told us to come up straight away.

In the meantime, she'd thrown up, and I think the doctor said that was the best thing that her body could do because it got the toxin out of her body. And then she became really lethargic and she fell asleep. We got her to the doctor and he did all vital statistics and she was fine.

But they just said that we needed to monitor her for 48 hours because an allergy, when an allergen is ingested, apparently it can lie dormant and it can trigger at any point. I mean, I don't know particularly the science behind it, but. So I was just completely on edge for the next two days.

But she suffered with a bit of a tummy ache and then again, it exacerbated her eczema. Head to toe, she was covered in eczema. But, yeah, that's one of the reactions that Rose has had that I think will always stay with me as a parent.

Was that before she had an EpiPen?

That was before she had an EpiPen, yeah. So now I think carrying an EpiPen just gives me a little bit more confidence and reassurance that if anything was to happen, it's always there.

And Dr. Hodge, am I right? Is that at LGI?

I think he works all.

I've seen him at LGI and at Jimmy's. Yeah. He seems to be the kind of lead on paediatric allergies in our area. Yeah. So all roads lead to Dr. Hodge, don't they?

We had a slightly different experience where Reuben was maybe about 15 months old and my oldest son, Rafi, was eating Nutella. Nutella seems to be the culprit. We still don't know to this day whether Reuben touched the Nutella, whether he managed to ingest any.

The first thing we knew was that he was over the age where he just started to pull himself up on all the furniture and he's toddling around and he was making a noise that, like Jo says, you have these instances that you just won't forget. A noise that a child of that age you wouldn't expect to make a very deep, hoarse, kind of almost like a grunting sound.

And I remember we almost joked about it, like, what's Ruben doing?

And then when I went to him, I could see instantly that his face had swollen and he had again, it was the hives around his mouth and just rubbing at his eyes. That's very much a clear sign for us. He'll make a face with his hand and he still does exactly the same now and he'll rub his eyes very strongly.

That must be where he feels the sensation.

So straight away I put him in the car and drove to Pinderfields, to A and E. I'd rung my husband and said he worked in Wakeville, very luckily said, meet me there. And so he'd gone in ahead and said, my wife's on the way with our toddler who she thinks is having an allergic reaction.

And I do think there is so much to be said for a mother's instinct. I've got no family history of allergies, nothing I've ever seen or experienced before.

But for some reason on that day, I instantly went to the source. I knew. I was like, something about that that's over there that my other son is eating has caused this to happen. So we got in the car, we went.

By the time we'd got there, he was very swollen and they gave him, I believe they gave him at that time, a shot of steroids, which I don't think is the. Is the approach now necessarily, but a shot of steroids to open the airwaves airways. I don't know if they gave him adrenaline or not.

It was all a little bit of a blur. But the antihistamine is definitely a first resort as well. So did that. And in fairness, everything calmed down then very quickly.

And it was probably 20 to 30 minutes in since he'd been exposed to the allergen. And very quickly things calmed down. And it was about observations from then on. But we. Because he had had the grunt and the hoarse voice that would.

All signs, they said, pointed to it being not just an allergic reaction, but an anaphylactic reaction. So it was very much like the EpiPen route.

And we were quite quickly referred to a consultant to have the skin prick tests which we had for all sorts of different foods. And I also remember the doctor saying to us then, are there any foods that he doesn't like? And straight away, again, the mother's instinct kicked in.

And I said with my first son, hummus was my go to. Was the only way I ever got any vegetables. You know, we'd give him bits of carrot or whatever cucumber, and it would.

The hummus would be, you know, that was the dip that got that they were interested in their D, like Reuben. I can't bear it. He absolutely cannot bear it. And the consultant said straight away, there'll be something in that.

So he skin prick tested then for chickpeas, which he didn't show up for, and sesame. So the tahini in hummus was something that he said, it'll taste awful to him, the fact that his body is allergic to it.

The only thing that he can do, the only thing his body can do to defend itself is say, that tastes awful. So he. I could tell he rejected it. So, yeah, we had these skin prick tests.

So we were really fortunate that we very quickly got done down to the nitty gritty of seeing what was essentially Reuben's kryptonite, which is very specifically hazelnut, is a no go.

And something that they've told me he will always be very sensitive to hazelnut and sesame, but that we cut out all tree nuts and peanuts at that time. So, yeah, it, it was dramatic and it was scary. And I definitely came away from that whole experience thinking, why us? You know, I felt like we have.

We have no history. We had done very conventional weaning. I hadn't. We're not overly cautious. I felt like our kids had been exposed to all of these things.

I would say, yeah, we're just kind of pretty free and natural and we eat a lot of different foods. But for whatever reason, that, that is Reuben's story. And yeah, it is something.

It was a real challenge to accept that and to go, oh, no, this is something we're gonna have to deal with for life. And he will have to learn to manage that, as will we. And so when they were little, you kind of think as they get older, it'll get easier.

And I'm now learning that as he gets older, I have less control over where he is, who he's with, what he's eating, what they're eating. So that's why the education piece is like so vital.

I have to make everybody I can aware of the realities of it and not to make it scary, which I can do because I'm fearful of it. It's very easy to make it scary, which the consultant's always very clear with me.

I don't know whether he always says to you, you've got to live your lives. You've still got to get out there and live your life.

So it's finding that balance, really, isn't it, Making sure everyone's aware and you're taking the precautions you can.

There's a lot to navigate, but I personally feel that we've had a really good experience with all the staff here that Rosie is in contact with.

At the start of every school year in September, we have a meeting with the teacher and just explain that she's got these allergies separate to the allergies. Her eczema is something that needs daily treatment and the teachers are amazing. They put cream on her when she needs it.

And, you know, every other week I probably get a phone call from either the teacher or the nurse asking if they can administer something, some like pyriton, cetirizine, antihistamine medicine. Because there are other, I think, environmental factors that Rose is allergic to that we can't help. For example, she did test positive for dust mite.

You cannot eradicate that from anywhere. And that sometimes can flare, but sometimes she can be fine. But, yeah, as a parent of a child with allergies, there is a lot to navigate.

I feel pretty confident sending her to school. And also now that we're making this podcast and there's going to be more awareness out there, it gives me more confidence.

Yeah, me too. The challenge is that I feel like just when you get used to what the allergy looks like, things can change. It's for. It's a constantly moving beast.

And I think, like, one of the things that we'd been asked to consider today was what happens in the instance of an allergic reaction. So we had that initial allergic reaction, which we were lucky. We got really clear indicators of what was going on.

But we have subsequently had experiences where Ruben's had allergic reactions. And one in particular, I knew he'd been exposed to hazelnut, so I could take the necessary precautions.

But if I actually look back at what happened to anybody else, I'm not sure they would have seen a great deal. There weren't any of those outward signs you would hope to see.

And actually the information that were provided by the consultant, if they talk about whether you're looking for a mild reaction or a severe reaction, actually the mild reaction tends to give you the more visible symptoms so that might be when you get the hives. They might have swelling, they might be itchy. Yeah, I have heard, like, the tongue swelling.

So sometimes I'll get Ruben to speak, like, speak to me, because then I can hear if the tongue is swollen. So you get all of those very outward signs. And at that point, those are the things that we would treat with something like an antihistamine.

But when it's tipped into an anaphylactic reaction, for us personally, it has been very, very subtle symptoms. So they talk about respiratory reactions. So there might be a persistent cough or maybe a wheezing. I've heard a whistling.

People can say the breathing can. Can give, like a whistling noise. We haven't personally seen any of that.

What we have seen more has been like a. I suppose it's like a cardiac reaction where I think it's the blood pressure dropping. So he can become quite lethargic. That's the main symptom we saw. When I knew he'd been exposed to hazelnut, it was an instant. He.

He wanted to lie down. He wanted to lie down and go to sleep. And that is.

That felt really frightening to me because I probably didn't react so much because it felt very calm and very quiet. Didn't feel like, oh, gosh, look, he's got a rash and he's swollen and the things that kind of jolt you into action.

It was like, oh, gosh, what's wrong with Reuben? And we got in the car to go to the hospital and he just. He just kind of very calmly wanted to fall asleep.

Having talked to the consultant after that and dissected what that reaction was about, the absolutely terrifying thing to me is that that was because his blood pressure was dropping and dropping and dropping and that that was the anaphylactic reaction.

And when you do hear of really, like, awful circumstances, outcomes of allergic reactions, that can be something that can kill people, I believe that it can be a heart attack at the end of the day. And I wasn't even. As a mother of a child with a severe allergy, I wasn't aware that I was looking for the respiratory stuff.

I was looking for the struggling to breathe. And people had said to me, you would know when he's had. If he was having an anaphylactic reaction, you'd know.

Well, actually, an untrained mind would perhaps have not even known what was going on that day. So that's, like, really fearful to me and a massive drive for me to be here today just to go, you've got to be quite tuned in to that child.

Because the other thing is he's not at an age where he's going to tell you I'm having an allergic reaction. We're very dependent on people just using those instincts to go, this isn't right, there's something amiss here.

And the other thing that I cannot stress enough and I have to remind myself, my husband, my family, everybody around me, never be scared to use the EpiPen because there's never any harm in using it. And I have to tell myself that because it feels like a massive deal to use it. But if in doubt, use it for sure.

Even if they are not having an anaphylax, the. The risk versus not injecting it if they are having it, is, yeah, massive.

Because I would say the two the things. If I can explain it in my simple terms, I hope I don't oversimplify it. So.

So there's kind of a two pronged approach with the anaphylactic reaction that it's respiratory or it's cardiac. And so if it's. Or both perhaps could be happening.

But what you need to do is to save them from the respiratory effects is to open those airways, which the adrenaline's gonna do really quickly. And the quicker you use it, the quicker it's gonna act.

And then from a cardiac perspective, it's going to stop those loose blood vessels, it's gonna tighten everything up and it's gonna get that blood flowing quicker to raise the blood pressure back up again, which is what you need for that quick recovery. So if you can get the adrenaline in before you've kind of got let it get too far, they can bounce back so quickly.

So, yeah, time is absolutely of the essence. And if that first shot doesn't work, so it's administer the EpiPen, call 999, time the five minutes, if you haven't seen any improvement, to use the.

The second adrenaline pen, which I know, Jo, it'll be the same. It always carried two.

Yeah.

So for any caregiver, like when I drop him off at school or drop him off at a play date or whatever, I feel like the most important thing for those people is to have confidence yourself, to trust your instincts, to know when something's off, and then to have the confidence to use the EpiPen, like I would. I would never feel any. I would never be cross for anyone for using an EpiPen unnecessarily. My fear is that you might not use it quick enough.

If in doubt, just use it. Always And I think that you've kind of, you've got to use it that first time to know that it isn't, it's not that big a deal.

It's not a big scary thing. I think we put a lot of onus on an EpiPen being a life saving device. So then it becomes fearful using it.

It feels like it's a defibrillator or it's something that's going to bring you back to life, which it is. But equally it is just a little tiny needle that delivers a little shot of adrenaline that's going to bring everything back into equilibrium.

So don't be fearful of it. It's nothing more than that. It's a quick shot, it's 10 seconds and then hopefully it's just about. You do have to follow it up with a 999 call.

But that is purely for observations. So, yeah, use it. If in doubt, use it. And Jo's actually brought with her today one of the test EpiPens and we have a number of those at home.

And again, if anybody ever wants to use one just to experience. It's a really true representation of what that click is to use the pen. They're great and I encourage the kids to use them.

I encourage the kids to show their friends them. And when our EpiPens go out of date, don't know whether this is technically what you're supposed to do.

When they run out of date, I will let the kids use them. So they'll inject it into an orange or an apple. Just because I don't even make too big a deal of it. Like, oh, let's see how an EpiPen works.

I just kind of go, oh, these EpiPens are run out. Does anyone want to have a go just so that they know? Because we've got to take the fear and the big deal out of it.

Because one of the things that another of the prompts, it's further down the conversation, but saying how having an allergy affects the child.

Something that we've had to consider and I think we will do going forward with Reuben and his, his temperament is that he's embarrassed of having an allergy as it stands at the moment. He doesn't want to be different. He doesn't, like, you know, you go in a restaurant and say, has anybody got any allergies?

And we'll go, yeah, Reuben's allergic to nuts and sesame. He doesn't want to be that kid. And I get why he doesn't.

We board a plane and I have to remind them again or just to let you know, we're sitting on row 10 and Reuben's got allergies.

And I've even had an instance where we boarded the plane and he's put his hands over his ears because he's like, I just, he doesn't want to hear that.

So anything we can do to take the drama away from it or take the, the fear away from it is, is great for me just to normalize it to see those EpiPens around something else that he absolutely loves.

I see a little sort of beam in him is when we meet other people with allergies or maybe there's a kid on a TV show who's got an allergy or a lady came up to me recently and asked me where I'd got. We have a little pouch that we carry the EpiPens in. She said, can I just ask you where you got that from?

Because that would be brilliant for my daughter. And. And I could see his little face. He was like, yeah, I'm not the only one. Or he's scanning to see who this little girl might be with the allergies.

It means the world to him to know that he's not alone, he's not unusual and that other people have these allergies. So yeah, any conversation around it is always going to be a bonus.

And for EpiPens to be something that are seen and are commonplace rather than like this life saving device that we hide away somewhere is really important for him and for us as a family. I think I have told Reuben that Rosie's got allergies.

Yeah, I've told Rosie. Rosie has got a speech delay as well, so I don't think that that would be something that she'd find easy discussing with another child maybe.

But she does know of Reuben.

Yeah.

Yeah.

Ruben's too young to talk about. He doesn't like talking about, just doesn't. He doesn't like it. I know he doesn't. It's just work in progress for us. That one.

Yeah. Rosie talks about her allergies sometimes. I mean she, she seems quite comfortable with it because I guess it's all she's ever known.

That and alongside the eczema, it's just the daily norm for her.

If anyone ever gives her a treat or she gets a goodie bag at a party, she'll always show me what she's got and she'll say, does it have nuts in mummy? That's so smart. Yeah. So she knows.

Yeah, I think that's something as well that we try to do at home. And I would urge anybody around Ruben to always do. It's just for it to become commonplace that you always do. Just check the label.

Because I do it for him all the time and I try now to encourage him. I'm trying to just sort of make him aware of what it is I'm looking at on that label. These tiny words.

What Mummy's reading at the moment is actually the ingredients. So it tells me if there's anything that contains nuts or sesame in here. Doing that.

Another thing that I'm starting to do at home as well is to encourage him to always taste things. You know, don't just take it for granted that the food that's put in front of you is safe the best.

Because if the size of the reaction, if they were going to have an anaphylactic reaction, the amount of the food they've ingested is quite important.

So I always encourage him just to have a little taste of something and to start and make that a bit of a common practice, even if it is, you know, you just cut a tiny piece and you taste it and you see how you feel. With hazelnut being such a biggie for him, I particularly do that with chocolate.

And we've had instances before, actually, where he's eaten chocolate that the label says is absolutely safe. And it still has prompted a reaction. Nothing terrible, but definitely a reaction.

We avoid every. All foods from Marks and Spencer's.

Marks and Spencer's for us, too. Marks and Spencer's chocolate. Other chocolates are available for some reason. I don't know this is the facility they're manufactured in.

Yeah, I think it is, but it definitely prompts a. It's only a medium reaction for us, but, yeah, their chocolate, even though it doesn't contain any nuts or sesame, definitely makes Reuben react.

All of their foods they may contain. And I think they do that as a blanket.

That's a recent.

Yeah. Which our consultant has said ignore that because you couldn't live your life by that. Every packaging that says may contain.

Because we're probably going to get to a point where absolutely everything says that. He tells me very much to look at every single ingredient and do it that way.

But, yeah, there are some things that should be safe, I'm saying in inverted commas, but they're not. They. They prompt a reaction for sure.

Yeah. And things change as well. So you do need to check the labels. We buy pesto in a jar for pasta sometimes and there's one particular brand that I.

Well, it's from Aldi. Their pesto there was made with pine nuts rather than cashew nuts. And now all of a sudden, it's got cashew nuts in it.

I mean, it is clear on the label.

But if you're just picking up, you know, robotic at the supermarket, picking up what you normally would, you know, you might not think it or give it a second thought. So I always check everything.

Yeah, that is good, because I don't always. You often buy the same. You repeat buy, don't you, from the supermarket. You buy the same things and you don't always recheck the label.

And I think that's another really good point. Going back to it being a moving piece. Like you have to. We can't ever relax on it. It's always changing.

We're always learning and kind of trying to embrace that rather than making it fearful. We're really lucky, I think, to live in this age of social media.

It's actually one of the real positive things of social media because you have all these networks of allergy doctors and allergy parents, allergy sufferers.

And I often you just kind of scrolling through, say, Instagram and you will see something that will say, oh, just a notice that, like Jo says, this pesto now contains so and so. Yeah, so that is a positive of social media. So mine, ours was with. At nursery. Reuben was at nursery when he first found out about allergies.

And nursery were amazing. I felt. Do you know what the biggest thing for me, the biggest confidence builder was that they weren't fazed by it.

When I went in and went, right, we found out this, they were like, oh, okay. Like they knew he's not the first child to have gone through nursery or to have gone through wherever any of those staff have worked before.

They weren't fazed by it at all. And it gave me such a sense of calm that they were like, right, okay. So they almost prompted me, have you got an allergy plan for. For him?

Have you got his EpiPens? Have you got a Cetirizine? We want to keep this in school here. We want to keep that there.

I can think of times when they would contact me and say, oh, just to let you know, the EpiPens in school, the expiration date is this. So just have it in mind that you might need to start ordering some new ones soon. They actually probably took control of the whole thing.

And when I was in a bit of turmoil, like, oh, my goodness, what does this look like for us? They were a real sense of calm for me, so nursery was absolutely fantastic.

The fear came for me when he was moving from nursery to a bigger school environment. I then panicked. But actually coming into school and having that conversation again, just to reiterate, this is our situation, this is what we need.

Yeah, very. A very calm and in control approach from school and it always eases my mind. And I think probably it is something like you were saying, Jo, you.

You come in each year to explain, like, to whoever the new form teacher is. I think it's something that I will commit to doing because the other thing, it changes. I always have new information myself.

I've always found out something new since we last spoke and it's just nice to reiterate to each new kind of care lead what the situation is. But school have been brilliant as far as I'm concerned.

I'll tell you what else absolutely made me chuckle and also blew my mind at the same time when I was talking to Amanda about it and she kept saying, oh, well, you know, the catering staff know this. And I was saying, yeah, but they can't know who Reuben is. She was like, they know exactly who Reuben is. I was like, no.

And she was like, no, of course they do. They know exactly who Reuben is, they know what he's allergic to.

And if in any doubt, she said, you know, there's a photograph of him up in school, just in case. And I was like, wow, that is brilliant. And it's one of the real strengths and beauties of being at school like this.

The size of the school, the nurturing kind of sentiment of the school. I feel like they are very held here. The nurse hasn't been involved.

There was a nurse before she was called Chloe, and I remember vividly that she gave me a. She rang me to check what to be expecting from Rosie for the allergies and the eczema.

So I think she must have been filling out some forms or something, but I do remember that. But I think the nurse has changed recently.

Yeah, yeah, yes, it's Laura now.

Yeah, yeah.

But obviously she'll have all the notes.

Yeah, of course.

So tell me, how did the conversations go for you when you first learned about things for Rosie? You knew about things for Rosie, but.

I think the allergies all kind of phased in over time, so it was.

It came with the eczema, so the eczema was first, so I needed to let them know that certain things will aggravate the eczema and she'll need moisturising often as well. And then when we found out about the allergies and the EpiPens. It was the same as what Lu said. They just seemed unfazed about it.

They know what they're doing. Not the first child, won't be the last, unfortunately.

So, yeah, it's just, I think for my own peace of mind, whenever Rosie is moving up a year, I'll want to sit down with that form teacher and have an in depth conversation with them because like you've said before, Lou, there's things that only you as a mother will pick up on Reuben when he's struggling with something. And it's the same for Rosie. I feel confident now that Ms. Slater and Ms. Peterson and Ms. Brooke, they all kind of know what to look out for.

I think that's a great idea to come in each year and talk to them.

It's something I'm definitely going to do because something Joe and I have talked about independently of school before is how we have this habit of apologizing that our child's got an allergy and, you know, you have to, you might go to a restaurant or whatever and say, oh, please, can you just double check if that's going to be safe? And you're constantly apologizing as though you're inconveniencing people.

And I felt a little bit like that when, oh, I don't want to bother school with it. I know they know he's got an allergy.

And it was my husband who in the end was like, for goodness sake, go into school, put your mind at ease, have the conversation with them. I'll come with you if you want. And as soon as I came in, it was.

He straight away realized it's not an inconvenience for people, they like to know more about it. They, they appreciate being given any extra information. So, yeah, to come in each year I think is a great idea.

I've actively stopped apologising for the allergies.

All the time, don't we?

Yeah, it is hard because you can see sometimes if you're in a restaurant and you advise them of the allergies, you can see they're like, oh my God, it's a nut allergy. What do we do?

Yeah, particularly if there's a queue or something, they're time pressured and you're a bit like, sorry, guys, I don't want to slow things down, but I really need to know this information.

But then in the same instance, we've been to restaurants where they just don't seem really interested, like, yeah, yeah, it's fine. There's no nuts in the kitchen.

It's like, well, yeah, there might not be any nuts in the kitchen, but there's cross contamination from other people, staff members, ingredients that you bring in, you know.

Yeah, we can only hope that that is improving. And I see, I see probably even in the few years we've been here at school that is ever improving and something.

What changes have you seen?

Just that the conversation is more open, people are talking about it and I feel like I hear and see a lot now about the school caterers, about Thomas Franks.

My kids talk about them, you know, as a company, like, oh, Thomas Franks came in today, like there's a very much a collaboration between school and the caterers. I see that really clearly. And the other thing that I see is when I talk about that we can hope that this is improving.

It doesn't faze the kids at all. That generation, they know about allergies and they, they're the ones who'll come to me and go, can Reuben have this? They are, they're. They're on it.

Where.

And then I feel like our generation, Jo, we're learning about it all the time because we have probably, you know, we've got kids and we're seeing all this increase analogy coming through.

And then it's probably more my mum's generation who have struggled to get on board with it a little bit more and they don't always remember to ask and to check and to do all those things, so. And don't understand the severity of it exactly the difference.

I think there was a time when intolerant food intolerances, that conversation became very prevalent and I think there can be some confusion between that and there's such different things. To have an intolerance and to have an allergic reaction are really different.

And yeah, I feel like the younger generation seem to understand that immediately. They're very on board with it.

People often fear what they don't understand or they can't see.

So that's why it's important for us to have these discussions, discussions just to raise awareness and hopefully make Ruben and Rosie feel a little more included, less different.

Because there are these risk co factors they talk about. So what your child could eat a food on one day and they'd have a certain level of reaction if they.

Were.

Under the weather. So if their immune system was compromised in any way, that reaction could. Would likely be bigger.

They talk about exercise being something that can promote a bigger reaction. So if, if your heart rate was elevated, you've been doing a Lot of exercise and then you ate that bun that had something in.

The reaction would likely be bigger. So, yeah, illness, exercise, certain medications you might be on for older girls, some stages in your menstrual cycle can prompt a bigger reaction.

So you've got all these risk factors stacked up.

I feel like the ones that we can control, such as foods being brought into school, I wonder whether we just need to be really strict on those to make it manageable, because it's not only foods. I think the biggest, the most likely thing is an anaphylactic reaction is going to be caused by a food.

But, yeah, there's all sorts of things, I think from the food categories, there is peanuts, which they separate out into its own category, peanuts. And then all your other tree nuts, milk, eggs, fish, including seafood. Have I missed any others off?

I mean, there's some fruits, sesame seeds, they put sesame seeds. They seem to specifically categorize, separate from the other seeds. But then you also have reactions to stings, bees, wasp stings, medications.

Penicillin can prompt an anaphylactic reaction.

We are investigating that for Rosie at the minute.

And how scary is that?

Yeah, I'm fairly convinced that she's allergic to. In fact. No, she has. Sorry, I can't believe I've missed this off. She has got a confirmed allergy to penicillin. Yeah.

And then she had a different antibiotic prescribed at the end of last year for an infection on a leg and she had a reaction to that. So, I mean, with the nhs, waiting lists are so long, so we're waiting to see a specialist just to see if she is allergic to other antibiotics.

But, yeah, we avoid, Sorry, penicillin now.

And the other one's latex can prompt an anaphylactic reaction, which I find that, like, really random, that you could literally put on a later a pair of latex gloves and that would prompt an anaphylactic reaction. So all of those different things can be things that you're related to and whether they have to be ingested or not is a bit of an unknown for us. We.

And it's not something that at Reuben's age, they're prepared to test in clinic yet I don't know whether later on they may look to do some food challenges with him, whether they test the reaction on his skin versus when it's being ingested. But for now, the message for us is just do not come into contact with any nuts or sesame at all.

And of course, the test under the NHS is doing a contact test.

Yes.

So that Shows.

Yeah, it's a little skin prick. They break the skin for it to actually move under the surface to see what the reaction looks like. Yeah.

So for us whether it's ingested or not is almost irrelevant. We just need to avoid entirely. Your milder reactions give you all those lovely warning signs. They give you even things as extreme as vomiting.

It's still classified as a mild reaction because it hasn't moved into anaphylaxis. So you get all those really clear signals. They're itching, they've got hives, there may be vomiting or other like stomach cramps, discomfort.

So you get all of that with your mild reaction. But actually the anaphylactic reactions get for us is much more subtle. Yeah.

So that would be something like the clearing of the throat, the constant coughing, the noisy breathing. Or maybe they're floppy. They are light headed, dizzy, faint. Which for Reuben at four, he doesn't know any of those.

I've noticed that's not, that's a completely unknown to him. Like to explain to me I'm dizzy or maybe dizzy but faint or lightheaded. He wouldn't be able to explain that to me.

That's on me to look at him and think. And that's exactly what we did see in the last reaction to see that he was really, really fatigued instantly.

Just very, very tired and very calm and peaceful. So yeah, that was, that was a little bit scary because that's something that it's hard to explain to other people to look for that.

For Rosie when it's a mild reaction. Hers tend to be a skin reaction where you get the highs and the itching.

Yeah, she'll always scratch around here. It'll always be her neck around her mouth, her face, possibly her eyes.

But then if she is grabbing her throat I know that that's moving into a more serious reaction.

Ruben's here as well. I will see him at his wrists and he'll even hide it. I'll see him pull his sleeves down and I think oh, that's a telltale for me.

He's itching because something is aggravated.

The first thing that I do is I go for the bottle of pyriton or cetirizine and I'll just give her a shot of that. And I think that takes maybe 15 minutes to kick in.

We've started to use that before known exposure. Another thing that Ruben is potentially allergic to his horses.

And so if ever we're going to be around horses, I know we are, they've now said to us Give him some cetirizine 30 minutes before just to kind of try and protect you against that environment, which actually has worked really well.

Yeah. Rosie has a shot every night before bed because her sleep's always disturbed by eczema.

I know I keep going back to eczema, but I think that they live alongside each other. Does Ruben suffer with eczema?

Sometimes he doesn't. He has dry skin. We haven't had any eczema.

But when they dug into how his allergies actually came to be, because we don't have any family history, I think more than likely it was his skin barrier that was compromised and that that's how the reaction came about in the first place, rather than him likely ingesting anything.

Yeah.

One of the biggest challenges that we find with Ruben is that he's quite agitated in that moment. And I think that that is, that's normal, that they can be aggravated. And I've even heard them take it as far as say that people can be aggressive.

And I suspect is that perhaps because your body's producing its own adrenaline, so you can feel quite restless and irritated when this anaphylactic reaction is happening.

So ironically, one of the things you really need to do in that moment is keep them as stiff as little as you possibly can, which is not what Reuben wants to do in that moment.

So it's a case of keeping him calm, asking him to lie down, legs up, which is quite a common thing to get the heart, the blood moving to the heart, and to administer the EpiPen. Ideally in that position. Don't be up and moving about, any moving about. And anything like exercise is going to promote the reaction.

So we need to keep you still and that kind of heart rate down as much as possible.

So either lying down with legs up, if there's any difficulty breathing, it might feel more comfortable to them to be sitting slightly more upright than that. But definitely a comfortable sort of laid position is going to be going to make the adrenaline and everything take hold much quicker.

So not standing up, not walking around, certainly not running around or doing anything that's going to get your heart rate up. And then it is administer the EpiPen, call an ambulance, and time for the second dose in five minutes. If you haven't had a good response already.

Me and Lou were talking earlier about how the children had basic life saving skills training a few weeks ago with the dummies and the CPR training.

Our kids were trying to put us into the recovery position at every opportunity. Something else worth saying is that the EpiPen will work through clothing. It would work through even a pair of jeans.

So, no, there's never any need to strip them off. Whatever environment you're in, the EpiPen is good to go. You can use it through the full trousers.

Time is of the essence when you need to give them the EpiPen, just.

Yeah, I think they say about two thirds down the thigh, outside of the thigh. And I wouldn't deliberate too much even about the positioning of it. I think it is straight into that side of the leg. I. I used to. With the.

When we first got the EpiPen, the approach was like. It was quite a strong swing into the leg. I have since sat down with the nurse and.

And used one of these practice EpiPens and she said, I think for you, you would be better. Now it's just you hold the EpiPen to the leg and then it's a strong push in rather than the big swing. It can feel fearful.

It starts to make it feel like a bigger thing, particularly for the child who might not be expecting it. So it's just a very strong, firm press and you hear a click. There's no doubt you know when that EpiPen has worked.

So until you've heard the click, it hasn't worked. It's a strong push. You hear the click and hold it in place for 10 seconds. I just worry that somebody might think, oh, we got to strip him off.

We need to use the EpiPen. Don't bother. Straight in.

I guess I was thinking of coming back to that bit about how we can help their peers understand allergies. Have you got any kind of tips either?

For you?

Just education. Just sort of adding it in as a normal thing when they're having a science lesson.

Totally open conversation. I would say in the school environment. Rafi is probably. Ruben's older brother, is his biggest advocate in this environment.

And so I always include him in the conversation about it as well. And he's really clear. I've told him really clearly, oh, Rafi, by the way, I've taken some extra epipensin to school.

So there is a set that moves around with Ruben all the time with whoever his teacher is in that moment. But I did actually manage to get another pair prescribed by the doctor because I wanted two to be in reception at all times.

So if in doubt, I just feel like every child. It's a small enough school where I see it every day. They all know each other, regardless of your age.

Reuben in reception and another child in Year six. They all know each other.

And I just think maybe it would be worthwhile if every teacher and every pupil at school knows there is a set of EpiPens at reception, there's a bottle of Cetirizine. Wherever he is on campus, people know that that is a dead cert. There's always some there.

And, yeah, so I let Raffi know that they're there and I think, yeah, maybe that is something. I hope that just that message kind of spreads and it does become very natural conversation.

I'm quite keen to put a positive spin on it in the end because I even feel, just in the course of having this conversation, I feel more relaxed about things.

And, I mean, that's like living proof that the more we talk about it, the more open we are about it, the more we share our information and our experiences, the more informed everyone can be about what might happen. Because we cannot. We can't pin it down. We can't go, right, that's analogy. That is what it will look like and that is what we'll do on the day.

Until the. Until it happens. You don't really know how it's going to happen and how you're going to have to react.

But having these conversations is so important and it's so reassuring as a mum and. And also I'd love to think we can find a way to badge it as a superpower, as I've heard other people have done.

You know, we have so much more understanding and knowledge of things like dyslexia now and adhd, and people have really. Yeah. Given that, a power and a forum. I'd love allergies to get that same kind of air time.

Because my dream would be that Reuben gets to a point where he.

He's never going to proudly tell people he's got allergies, but that he can really openly and confidently, without any embarrassment or need to apologize, tell people, oh, yeah, I'm allergic to nuts and sesame, and this is how it affects me. This is what I need from you.

I love the idea of that, that he would be, I agree, just open and clear about it and that other people wouldn't feel fearful or fazed by it. That's the dream for me. Yeah.

Maybe they could invent a role within school, like an allergy promoter or something.

And if that person didn't. Yeah, yeah.

You know, well, maybe not a little badge. I don't know if that would be singling them too much.

But if that person. That person. The real win is if that person who was the allergy ambassador doesn't even have any allergies. For me, I'm like, that would be super cool.

Because I don't always want it to be that, oh, Reuben, it's your responsibility to get out there and promote. It's often, you know, the people around you, I'd love them to share in that responsibility and keeping it safe.

Analogy ambassador. I like that. You know, they've got ambassadors for Internet safe. What are they called?

Digital ambassadors. Eco Council. So there's. Yeah, there's space for it in some sort of health and wellness space, for sure.

I don't want parents to ever feel like, oh, I don't invite Ruben round, or that it feels scary to them all for kids, kids, parents, teachers. I don't want anyone to feel like he's too high risk. Like, I just really would love to put that positive spin. It's. You have to get on with your life.

It's. It, it's manageable. It is manageable. If we're all educated. It totally manageable.

And the worst case scenario, he has an allergic reaction, or Rose does, or any of the children within school.

We use the EpiPen, we follow the procedure, and what could be a massive, awful thing, potentially a catastrophe, is actually contained and totally managed. That's the dream, Sam.