So yeah no one really sleeps and it’s really stressful, it makes you feel sick when she’s, you know when she’s like this because you, we’ve seen, you know we’ve seen how bad it can get and you know we’re always, I mean one of the sad things, I do remember going to see our asthma nurse and saying I don’t think normal people pack a bag for hospital when their kids have a cold, you know like cos when she starts getting bad, quite often we’ll do that, we’ll have a bag ready. Not so much this last year but certainly the year before we did, like you know, so and I don’t think that’s entirely normal. You know so, but yeah so they’re the sort of little things that you do just to try and make it easier, you know and , but no, yeah no one’s sleeping.

Do you think all his sort of episodes of sort of flu or flu-like illness are similar?

Yes. Yeah he gets a temperature. He gets the croup with it. He gets, yeah, very hoarse, very mucusy. Well yeah they’re about the same symptoms every time. And that’s why I think I know what it is every time because it’s. There is no change in it. It’s, it is what it is.

Ok so it is the same. Yeah. And the fever for how long does it last?

Couple of days, two to three days. He can have Calpol although sometimes it doesn’t, doesn’t change it. It’s just literally a case of stripping him off and letting him cool down.

Ok and regarding his overall condition when he’s ill with this flu-like what do you need to do differently?

He drinks more because he does get, he’s off his food. So he drinks, he does drink a lot more but sometimes he doesn’t want to drink because I think he gets a really sore throat. And that’s the thing isn’t it, getting fluids in you.

So regarding when he is ill you don’t tend to go to the doctor’s?

I don’t know. I don’t if he doesn’t need, like I say I’ve been to the doctors with him previously, same symptoms and everything else and it’s just viral. That’s the answer. Everything is viral. It’s viral. It’s a viral infection. That’s all you tend to get and obviously viral infections they don’t prescribe anything for anyway so I don’t tend to go.

I think we have two GPs, one of the GP’s explained the logic of it. No-one ever did, he explained to me, it’s very, very good, okay you’ve got to put him in the room temperature and strip him down.

Raise the heating in the house okay, it’s normally happening in the winter time, raise the heat really high until completely, really warm if you and I just had a t-shirt, strip him down, allow him to cool naturally so body, okay. And that seemed to really work well okay. In the past we’ve followed this instructions and followed them and it cooled him down, open the window and he just shoot up the temperature, even sky high. So and we took him to hospital. So since then bit by bit we’ve learnt and he’s, we’ve managed to get him better.

In terms of actually one thing I probably haven’t mentioned that is quite challenging is [son’s name], when he feels unwell, he has a loss of appetite, which really, really complicates things, because that means I have to be extra cautious when I administer insulin, because if he hasn’t eaten then I don’t know what the impact will be. Will it just bring it down to normal range or will it send him hypo. So I need to really be extra cautious with that. But five years on, I’m more, I’ve kind of got the courage now to kind of give him more insulin than probably, you know, I could send him hypo, if you like [laughs] on purpose, just in order to bring him up with a bit of glucose, and then I can stabilise him that way. There’s different ways in in which I can manage it.

So we found through experiments, different types of juices, Lucozade, different things that he will consume when he’s sick. So now we know where, you know, we’ve got to know our son and we know what he will take. We tried everything, you know, sugar with water. We tried honey, we tried this. When a person is sick they reject the normal type of foods that they would normally have. So you just have to, identify which are the ones that they’re willing to have. Ribena, full sugar Ribena worked quite well. So it’s finding that right treatment, and once he was willing to accept it that’s when, you know, I could bring the sugar levels up, give him the insulin to remove the ketones. Once he was well, then he could recover from his bug [laughs] so, yeah. It’s a challenge.

Have you tried any complementary approaches?

I do yes. I have. I used for example I use Olbas for him to help him to breathe easily for his clothes and his pyjamas. And also for baths I sometimes give him some Eucalyptus to help breathe easily as well and I used bath salt, relaxing as well to deal with all those things. And very soothing, I use Lavender, so it’s very soothing for him with a lovely bath, he likes it okay, he loves his lovely bath. And for aches and pains I do a massage sometimes, okay I use a massage oil.

So you gave Calpol –

Calpol [paracetamol] and Nurofen, [ibuprofen] and chesty cough and sore throat mixtures. And nose drops for the congestion. Lots of blowing her nose. Wrapping her up. Keep giving her a hot water bottle. She likes to have someone sit next to her and cuddle her all the time when she’s feeling that miserable. So me or my mother were sitting with her, or my husband was sitting with her on the floor watching children’s programmes, and hugging her for a lot of four, five days when she was at home.

What else do you do? Apart from the medications, and the love and care? Anything –

We, we give her – we do give her vitamins, multivitamins and vitamin C. Particularly when she’s sick, we give her. And when she’s sick she tends to only be able to take it in like an infant liquid form, you know, obviously for various reasons. And we do try and make sure she eats really well, but when she’s sick we don’t push it for the worst days, we just give her easy things to digest that she likes eating, like scrambled egg, or cheese, nothing scratchy on the throat. Juice – she’s started drinking, been willing to drink juice in the last year. Which helped. She had a bit of juice. But up until sort of 11, she wasn’t willing to even taste juice [laughing]. So, yeah.

It wasn’t her thing, really.

No [laughing].

In terms of actually one thing I probably haven’t mentioned that is quite challenging is [son’s name], when he feels unwell, he has a loss of appetite, which really, really complicates things, because that means I have to be extra cautious when I administer insulin, because if he hasn’t eaten then I don’t know what the impact will be. Will it just bring it down to normal range or will it send him hypo. So I need to really be extra cautious with that. But five years on, I’m more, I’ve kind of got the courage now to kind of give him more insulin than probably, you know, I could send him hypo, if you like [laughs] on purpose, just in order to bring him up with a bit of glucose, and then I can stabilise him that way. There’s different ways in in which I can manage it.

So we found through experiments, different types of juices, Lucozade, different things that he will consume when he’s sick. So now we know where, you know, we’ve got to know our son and we know what he will take. We tried everything, you know, sugar with water. We tried honey, we tried this. When a person is sick they reject the normal type of foods that they would normally have. So you just have to, identify which are the ones that they’re willing to have. Ribena, full sugar Ribena worked quite well. So it’s finding that right treatment, and once he was willing to accept it that’s when, you know, I could bring the sugar levels up, give him the insulin to remove the ketones. Once he was well, then he could recover from his bug [laughs] so, yeah. It’s a challenge.

I go into sort of military mode, I’m, I make a lot of lists, I monitor her mood.

Okay

Signs of irritability, breathlessness. Whether she is walking around and playing or whether she is taking more breaks and just lying down on the floor which she does to almost catch her breath. I monitor that. Her temperature, I take her temperature routinely and keep a chart. And then I become very conscious about the food that she’s eating because she’s on an antibiotic I often worry about her tummy and so, I mean I do breastfeed but I don’t always know, especially at 18 months what they’re getting and what they’re not. She’s hydrated, that I know. But I’m sure there’s nutrients over and above that that she requires. So I’m very conscious about what’s going in to her.

Fever, fever is the main one because that means that there’s an infection that she’s fighting.

And what, how, what is high? What is, is there a particular?

There is, there is and a lot of people think that anything over 37.4 is a fever, so for Meg I don’t worry at that point. I don’t worry at 38, when she hits 39 I worry.

Yeah.

If I can get it down with Ibuprofen or Calpol within four hours then I still don’t panic.

Yeah.

If I can’t get it down within 8 hours then I know that there’s a problem.

So what would you at this sort of, eight hour point what do you do then?

I phone the hospital, the children’s ward,

And is that regardless of the time?

Regardless of the time.

Yeah, because you’ve got the open access

Open door access.

Yeah.

And I go in.

Well, it’s the hours and hours and hours of it and when you’ve got a child, who is feverish and so probably not sleeping very well and coughing and struggling, when it comes to a point, I think I phoned the out-of-hours service about four or five am and said, I’ve got to bring him in. And they gave me a slot about half five, six o’clock or something. So it was sort of later on in the night that I knew I had to take him. So it’s just, it’s just, you just lie there listening to them don’t you and you keep popping in to make sure they’re alright and end up sitting on the floor of their bedroom just watching them [laughs].

So yeah, that was the most stressful I think because we were a bit worried about him, whereas in other situation, we were more worried about ourselves because we weren’t sleeping [laughs]. Whereas, yeah, but fevers and viruses do affect it hugely, don’t they, because they do, that’s what brings on, I mean a child can be completely fine and have no asthma symptoms during healthy episodes and then you have a virus in the house and suddenly, it becomes quite frightening. My asthma nurse at home, she always says, Just be alert because it can come on very quickly. That was one of the most helpful pieces of advice I was given, actually, with regards to my youngest child.

I think because we learn now how to manage things better.

OK

So, it is much better because we know the minute he has a virus flu, cold that we start the blue Ventolin [salbutamol] inhaler, twice a day, so that it then hopefully limits the need for antibiotics for a full-blown chest infection. That’s not a guaranteed remedy but I think because we now know how to manage things a lot better we stop most infections progressing.

Yeah

And, at the end of the day, the aim is to stop antibiotics you don’t want to take the antibiotics unless you really need to. Because too many antibiotics are obviously not good. So, I think it’s managed better yeah.

I think I can say now that I can manage things a lot better in the last sort of three years or so. I think, because I’ve seen my son have various illnesses, I now feel more confident in the way that we manage things. But that’s only through course of time and having certain viruses and things happen to him. Where maybe we haven’t used the inhalers early enough and he’s had to go on antibiotics and maybe the antibiotics haven’t worked and you go onto some more antibiotics.

And it just pans the whole illness out for him and then, as you get older, that’s more time off of school and then the more antibiotics you take the more other infections I find that he then picks up as well ear infections, throat infections which you sort of go hand in hand. So I think, finally I now know to, with myself and my son, give the inhaler the chance very early on, the minute you start feeling ill with a virusy, chesty kind of thing.

Yeah

And that certainly helps.

And what would it say about things like getting a cold or a flu or something like that?

Janet: Well, we have to watch out for the temperature first.

Phil: Yeah, if the temperature rises then we know something’s wrong.

Janet: And then we’d have to take him in. We’re not allowed to give Calpol; you’re not allowed to give Ibuprofen cos it masks temperature and interferes with the platelets.

OK, both paracetamol and Ibuprofen?

Janet: Yeah basically. We have to get him within the hourwell, within the hour to hospital so that they can take bloods, then they’ll give him the Calpol to bring it down.

Oh, so they can give it in hospital monitoring him?

Janet: They can give it in hospital as long as they know what the blood counts are. So, sometimes when he’s spiked temperature we’ve gone in, they’ve done blood counts; he’s had good counts so they’ve discharged us, we can give paracetamol for forty eight hours.