Do you have a view as to when the antibiotics should be prescribed? In general, we’re talking about a flu type situation?

I’ve always had the opinion that because leukaemia is a serious illness. I’m very open to antibiotics. I think that they should be given as early as possible in my opinion because I know, I know from my rudimentary knowledge of medicine that it, they can something like the flu can lead to something much more serious in a childlike Alfie. And I know of other children that have had things develop into pneumonia and other illnesses which are worse I don’t know if flu directly can be, you know, what I mean, like I think that it’s really important to give, I’d never question them giving antibiotics even though I know that you should limit the amount a person, one has of antibiotics. I know that you shouldn’t just take them willy-nilly but, and I’ve always been very careful about completing courses and giving them the right dosages, the right times and try to be as conscious, conscientious as I can be about take, giving them correctly when I’m giving them from home. But I know other parents that have, that are resistant to giving antibiotics and would rather limit them as much as possible. But I think for Alfie it’s important that he’s given them, if he needs them then we, he should have them like immed, as quickly as possible.

Well obviously or it’s always you hear that you shouldn’t have too many antibiotics but you sort of sort of build-up resistance. But then again in my opinion if you need them you need them, and, and I don’t think the GP’s would prescribe them just for the sake of it, and, and where we also quite often do this talk, discuss with my GP whether we want to wait a few more days or start the course straight away, I think you know if you need antibiotics and if my children need it then I’m quite happy to give that to them. So yeah no problems having antibiotics prescribed to them, that’s fine.

And I guess you know, why my older son, different medical issues than to wheeziness, but he for his first two years pretty much had a course of antibiotics every day, not every day, every month. So yeah so he got prescribed pretty much once a month antibiotics. But then I did appreciate that he needed it. So yes he might have built up a bit of a tolerance but then again you know his condition would have not got better without it, so although I was concerned a little bit I still gave the antibiotics to him because obviously they needed it so.

Now, I want to ask your views about antibiotics, because Ella seems to have had quite a lot over the years. Do you have any concerns about that, or?

I mean, I haven’t.

Or what do you think?

I haven’t, I haven’t. Because you hear people saying that obviously if you have too many antibiotics, when you do get an illness they’re not as effective. But in the other hand, [sigh] when you see your child there that’s poorly, and needs the antibiotics to make them better, then how can you not say “don’t give them?” You know? So yes, I have concerns if doctors were just giving them out willy-nilly. But even if they wasn’t really following it up that they had flu-like symptoms, if someone just went in and they’d got a bit of a sort of a temperature that wasn’t that high, but then decided ‘oh, we’ll just give them antibiotics just to cover us. Yeah, that’s probably not the way to go. But at the same time, obviously you want to be sure that you’re not missing anything, and obviously the antibiotics would, would nip it in the bud if you caught it that bit earlier. And that, I think that’s, that’s the key with Ella. The slightest symptom, and the first sign that we get that she’s not right, if we can get her on the antibiotics, it takes a lot less time for her to bounce back from it than what it would be that if we let her sort of carry on with it for a day, three days to a week. The longer it’d go on, the longer it would take for the antibiotics to work, and get her over it. Whereas if we was on the ball and we, we noticed her symptoms fairly quick, within a day, and we got the antibiotics started straight away, generally within, within the week – as I say, three days of being on them, you notice a difference.

We sometimes see a nurse practitioner if in an emergency you know, if she’s the only person available and she’s allowed to prescribe. She’s far more reticent to prescribe antibiotics.

Okay.

So on the last occasion I mentioned in July of this year my son ended up with another episode of pneumonia, we saw the nurse practitioner for the first consultation. She prescribed steroids but not antibiotics and we went away, you had three or four days at home, getting steadily worse, more and more lethargic, more and more mucous, more you know more generally unwell. We then went back to see the GP who agreed that actually he needed antibiotics in addition to the steroids and I felt that perhaps that should have been done on the first occasion, knowing his history. And obviously the nurse practitioner didn’t know the history. But then again I understand that she’s been advised not to give antibiotics unless she feels they are strictly necessary.

And tell me a little bit more about that earache? So he had these sort of flu-like symptoms?

Yeah, and he was just touching his ear a lot. So we kind of – again, it was a heavy, heavy cold. We assumed, we left it. I think with the earache I actually went, that was one of my earlier visits to the doctors. So I kind of took him, because he was touching his ear so much, we took him – I took him to the doctors, I think it was on the first day. But they said they couldn’t see anything. And then when I did go back after the 48 hours, apparently it was obvious. So, which could have got worse, it could have got worse over the 48 hours – it might not have been obvious on the first visit. But, but I think when you take a child, especially a non-verbal child, to the doctors and they are constantly touching something, as a mother my opinion is that there’s something wrong. And especially with a maybe, I think that, that is probably one of the times that they could have prescribed an antibiotic, maybe.

I think each case is different. And I think really it’s the parents I suppose and the GP to kind of come to a decision about that because there were, there are times and there have been times like for instance when he did actually get pneumonia I actually really wanted him to have antibiotics because I thought it was already leading into a chest infection.

That’s right.

But because they thought it was a virus they held out and he never got antibiotics, and the chest infection became worse and worse, so they were, that time I, if I had the option of early you know preventative antibiotics I would have taken it. So I think each case is kind of different and I can’t, yeah. I can’t make that kind of blanket statement.

And tell me a little bit more about that earache? So he had these sort of flu-like symptoms?

Yeah, and he was just touching his ear a lot. So we kind of – again, it was a heavy, heavy cold. We assumed, we left it. I think with the earache I actually went, that was one of my earlier visits to the doctors. So I kind of took him, because he was touching his ear so much, we took him – I took him to the doctors, I think it was on the first day. But they said they couldn’t see anything. And then when I did go back after the 48 hours, apparently it was obvious. So, which could have got worse, it could have got worse over the 48 hours – it might not have been obvious on the first visit. But, but I think when you take a child, especially a non-verbal child, to the doctors and they are constantly touching something, as a mother my opinion is that there’s something wrong. And especially with a maybe, I think that, that is probably one of the times that they could have prescribed an antibiotic, maybe.

I know, it’s a good point. I mean, it’s just the way you divide your, I guess the way you divide trying to do what’s best for your child and my children doing what’s best for Alfie is not, is the opposite of doing what’s best for [youngest’ son] I suppose. I mean, for [youngest’ son] for, yeah, you’re right, for Alfie we give them I mean, he’s never had a bacterial infection so all the times that we’ve been into hospital with a temperature and going on these two very high, I remember the nurse at the very beginning, very quite irresponsibly describing them as being like bleach. So super hard core antibiotics for Alfie, he’s never actually needed them but he’s never actually had a line infection or some really, really nasty thing going on. But he’s been exposed to tons of these antibiotic, well these antibiotics repeatedly as a cover for just in case he’s had a nasty infection. And they wait for the blood culture to come back which takes forty eight hours and then we know, Whew, OK, that it wasn’t something really serious and he comes straight off them. But we’ve never questioned going on them. Whereas with [youngest’ son] you’re right, I think I weigh up whether he needs them and it’s very unlikely that he does just like Alfie. But we don’t, he’s not at risk in the same way that Alfie is. You do, you have to weigh up the risks and with [youngest’ son] he’s a healthy little boy and if it’s very unlikely he needs antibiotics then of course we’re not going to give them to him just in case there’s a five percent chance and he’ll be fine anyway. Whereas with Alfie if there’s a five percent chance he has got a bacterial infection we’ll almost definitely give them without, unquestioning, you know, we will give them because the implications are so different.

I learnt very quickly that you don’t need an antibiotic for everything. Which is also why when Meg is ill and we go into hospital and they run a battery of tests we sit and discuss it, does she, do, or the consultant will sit and say to me, Do you understand why she doesn’t, why I’m not prescribing an antibiotic? Do you feel she needs an extra antibiotic? And I’m very grateful that she is on one because there is a need for it. It’s helped, it’s made a huge difference.

Oh okay.

That’s made a huge difference.

How long has she been on that now? When did they start it?

She was seven months.

And how was that decision, how did that come about?

The doctor we saw privately advised us to go on Azithromycin because all their lung children were on it, specifically during the winter months. They would prefer them to be off it in the summer, now some children cope with that, and some children don’t.

Because Meg had such a severe pneumonia episode they decided initially to put her on two mls a day and she was on that for three months.

Okay.

And then we went onto it, just to get us over the winter, and then we went onto it Spring/Summer three times a week. And we’ll continue on that throughout this winter and see how she fares.

Sorry the question you asked, oh what are my concerns, pros and cons?

Yeah, pros and cons for her now.

This is a topic that comes up quite frequently amongst us parents, or mothers and fathers whose children are on not only antibiotics but also steroids as a form of maintenance and control with lung disease. And there are people who have very strong opinions about antibiotics. I think there’s a, there’s definitely a time and a place for it. I think because of how I grew up I, my natural instinct is to resort to an antibiotic, I have seen how well it has worked for Meg and the difference it’s made to our lives. I don’t feel stressed out any more about her illness, I don’t feel like I need to panic and watch her all the time. In the back of my mind I know she’s on something that if there’s a bacterial infection in her lungs she’s going to be okay. I’m probably not going to land up in hospital with it. So it’s, I’m sure that there are cons to it, I haven’t looked into it too deeply, mostly because I think she has improved so much I’m hoping that she won’t need it in the long term.