Were you much aware that Ciaran could have complications?

Not really, no. It wasn’t something that we were expecting. I mean, we knew about the flu and things like that, but I didn’t think that it would lead to double pneumonia, no I didn’t know that.

Based on your experience now, how serious do you think a flu like illness can be?

I think it can be very serious for health- for children who have underlying health issues. I feel that if you’re told, you know, then at least you’re prepared for it. But yeah, I think that it’s very important to realise that if there’s any flu like symptoms, particularly fever, you need to be sort of, on the ball pretty quickly I think and give him antibiotics straightaway.

Okay, so now you feel more prepared.

Absolutely.

If there is anything you wish you had known from the beginning, about flu-like symptoms and how it was going to affect you and Ciaran?

Well, yes. Basically it’s, it’s – as you’ve said, I never realised that it would turn into pneumonia. I never realised that we’d end up, you know, going into hospital A&E and going into resus. That was a bit of a shock. Sort of made us far more aware now that, that we need to keep more of an eye on that and not think that actually we’ll manage on our own. You know? There’s always that fear of you acting, being over protective. You don’t want to end up being like a, an overprotective parent, so. That kind of plays on your mind as well. But actually in hindsight I just think it doesn’t matter what anybody else thinks, you do what you think is necessary, you take them to the GP, you take them to A&E. Doesn’t matter what people say, whether you’re overprotective. Better to be overprotective, I say. You know?

It was, yeah, I was just totally delusional about what the flu entailed, totally delusional. In fact, Jack didn’t even want you to breathe in the same room as him, because they said everything hurts, like your hair hurts and, you know, he had all trauma from nasal suction and it was just, it was awful, wouldn’t wish it on anybody to go through. I said, you know, and in the space of them like three days, you know, to, to see him be all right and then just to see him totally flat and, you know, it was just, it was just awful.

But, yeah, I didn’t have a clue what, how bad it was or, and I know the posters say Flu Kills and stuff but I think, I just thought that’d be for like elderly people, didn’t ever think it would affect, and I know Jack’s not like a healthy, normal child as such but he’d been really well for six months. You know, we’ve had no issues really so I just didn’t think it would be that. And I didn’t think it would be that bad.

OK. So you have changed

Oh definitely.

your views

Definitely, definitely. And like that’s why I’m, make sure you get your flu jab. And make sure you get [laughs]

[Laughs]

because we all get it

OK.

Anything you wish you had known from the beginning?

No. I think I was naïve because I didn’t know how serious the flu was. But I think at the beginning because I noticed that slight change in Jack, without knowing it was the flu, I took him to hospital. So we just seem to be, just happened to be in the right place at the right time. But now I know how serious the flu is, I think that’s like the main thing I take away, just to be vigilant. And if there is a slight change in his condition I’m very aware of it now, and I would be prepared to go and sit in A&E for four hours and come home if they go, Yeah, it’s fine. But I wouldn’t take that chance anymore.

When he has these flu-like symptoms, how serious do you think flu-like illness or flu-like symptoms to be, for a child like Arthur?

I think they can be very serious. Because of the – especially. With Arthur, because it’s – you assume – sometimes you assume it’s something. Like he gets a cold, you assume he’s got a cold. Or he’s got a bit of a temperature, ‘Oh, maybe he’s getting a bit of’ – because he has the flu jab annually, has had since he’s been able to have it. So we kind of again, assume it’s not going to be flu. But then I suppose we need to be open-minded about the fact that although there’s a flu jab, there could be another strain going around that he’s not protected, or none of us are protected against. We’re, we’re very – with Arthur we’re lucky because he doesn’t have the underlying medical conditions. I think if I had a child with Down’s syndrome and he had the heart problem or the stomach problem, or if you speak to other friends that I know of through DSA [Down’s syndrome Association], they would maybe be very different and very – much more negative about the illnesses. But because Arthur is so well generally, I don’t tend to worry too much. Until maybe we get to past that 48 hour period. Because there isn’t a reason – apart from it taking him longer to get better, or maybe longer for the antibiotics to work, he shouldn’t end up in hospital because of a flu-like symptom, because he generally is well. If that, does that make sense?

For us it’s just the diet, really. I do give vitamins as well, but I’m not sure whether they really make a big impact. But I think diet, increasing fruit and vegetables. Making sure they get a good night’s sleep. Seeing, trying to find out when they’re feeling you know, looking a bit unwell or tired and not trying to push them too much to do stuff. You know, cos we’re quite an active family. So making sure that they rest and yeah, I mean, I wouldn’t hesitate to keep [son’s name] off school if I felt that, you know, he was, you know, he starts to develop these little signs like I mentioned previously like little cold sores here and there. So I can kind of tell when he’s a bit run down.

Yeah we tend to encourage him to rest as much as possible so one of his hobbies for example is horse riding which obviously is outdoors, in the winter it’s a lot of cold air going up your nose which is another potential trigger for asthma, and it’s a bit you know dusty and etcetera. So we tend to withhold things like thatif he’s starting to show symptoms of flu-like illness. And encourage him just you know to rest as much as possible. Not over exert himself too much so we try and reduced a lot of the likelihood of him becoming breathless and wheezing unnecessarily. Another thing that is just making sure he stays warm you know if he, if he feels cold you know make sure we’ve got the heating on, make sure he’s got a blanket or whatever. But we don’t do anything else particular I don’t think.

What about, just out of interest I’ve just thought of this, the swine flu year I don’t know what she would have been? She would have been, that was that four years ago.

Well they thought my oldest had that.

Did she?

And she had to have the course of treatment but no she was fine, the younger one.

Did she have that?

But she actually went to my Mum’s, she went and stayed at my Mum’s while my older one had the treatment cos we didn’t want her to, she was diabetic yes, so we didn’t, well we knew that she could, if it was, I don’t think my older one did have it but

Oh I see.

Yeah.

To be safe.

Yes, anything like that if my older one has anything like that she would go to, the younger one would go to my Mum’s so she’s out of sort of the risk really.

It’s no, I just wouldn’t

Just don’t want her to?

No, just don’t even want to take the risk.

No, I mean obviously I would try to avoid if you know, let’s say if he’s been invited to a birthday party and you know that half of them are really bad with the cold or sort of, well cold I guess cos if they had the flu they hopefully wouldn’t bring their children to parties, but I have sometimes decided not to go to a birthday party just to avoid him getting you know a new episode just because I know that his immune system is quite low and he tends to pick these things. Winter time trying to avoid play, play centres, indoor play centres are things where you know that sort of where the germs will sort of yeah, but I still try to live as normal a life as I can, and for him to be able to live as normally as possible, and try not to avoid places. But at the same time sort of, oh it’s autumn now and it’s, you know that it’s getting worse so if you can avoid places that it’s most likely to come in contact with lots of children and potentially people with colds and flu then I’ll stay home.

And also we don’t, in the winter months particularly, but just generally, we don’t take Alfie to for example, children’s play centres. We don’t take him swimming, to public swimming pools. We don’t go on aeroplanes. Anywhere, any sort of very busy public place, particularly that’s enclosed, which is why in winter it’s harder. Particularly that’s got lots of children in it. We’re very careful. We were more careful at the beginning. You know, we’d go into a café or into [supermarket] or something and sit, sort of thing, ahh, I, and you have to make a call on it, is this too busy to be in here, you know. What’s the risk? And you see someone coughing, Ohh, get him out, get him out. Whereas now, we’re, we’re much more used to it now and you kind of sense whether you’re OK to be somewhere or not. And if I’m at swings and Alfie’s sat beside some kid that’s got a rotten cold and just looks awful, we leave, kind of thing. It’s the same with chicken, the risk of chicken pox and that kind of thing with, where we just have to be very careful.

And do you, do you restrict anything? Is there any restrictions that this puts on your, on your life as a family? Are there things you avoid?

Yes, I avoid play groups. I

Completely?

Completely.

Yeah.

Initially, especially in winter I won’t go to play groups. She loves those soft play centres, I, we go, I don’t put her in the ball pit, I just think there might be more germs there, it’s crazy. I walk around with antibacterial wipes, I wipe everything down. Antibacterial gel, so far touch wood it seems to have worked. But then she’s been on the azithromycin which is probably why it’s worked, you know why she hasn’t got ill. I am very particular about washing hands in the house, people coming in washing hands. I have I’ve very verbal about it, people know just to not share spoons and, you know lick things and share too much food and so yeah, I’m careful.

So your friends have sort of gotten used to

Yes they have.

used to it?

They have.

Yeah.

And trains and planes and…?

Planes no. I just, I’m very concerned about planes, very concerned about aeroplane flying. I do think that’s where she got sick on our way to [country name].

Yeah.

Cos I also think that her, she de-saturated in the air which I didn’t know could happen but I’ve since found out that it did.

Okay.

It could have. Trains I avoid, we travel by car.