So what are your views on the flu jab?

I think it’s brilliant, yeah. Yeah.

Okay.

For someone like her it’s brilliant, yeah.

Any – the pros and cons?

There aren’t really any cons. The only thing I’d say is last year apparently the flu jab [laughing] wasn’t a particularly effective one. But she was fine anyway. But yeah, I find it incredibly reassuring, and will always go and get her a flu jab. It was brilliant when they changed it from a jab to a spray. That was really good. Because she was beginning to get quite fed up with being jabbed with needles. So that made it a lot easier. Yeah.

Okay. So how serious do you consider flu-like illness to be?

For Eliza? If she got flu, I would be worried. Just because she can go downhill very quickly with, you know, anything really. But she just doesn’t seem to get it. And I guess that’s the flu jab that’s doing that.

That it’s helping?

Yeah.

And does he get the flu vaccination these days?

No he did have it once, when he left the hospital, but yeah I’ve chose not to give it to him actually.

And why is that?

I dunno. He was quite unwell and my oldest child I’ve never given him all of his vaccinations, I’ve only given him some of them.

And yeah I just didn’t want to give him all of those. I felt like he was on overload cos he was on a lot of drugs from just starting from when he was born, and especially if he got infections he’d be kind of blitzed with loads, broad spectrum antibiotics and loads of stuff and I just felt like he was kind of over drugged. So I, that’s why I kind of reduced it and when he came out of the hospital apart from kind of getting him off of the drugs, even though I did it safely with doctors support.

Yeah.

And sometimes not support at the beginning, and I’ve done a lot of holistic therapies as well because I’m trained in massage and a lot of other therapies, so I’ve done a lot of holistic therapies with him as well. Cos even when he left hospital he didn’t like to be touched, because most of the, everyday it was needles and things in his hands and feet and even his neck and his head so he hated to be touched. Yeah so I’ve done a lot of kind of work on him like that.

And what about now that he’s older and not on medication, and not on medications anymore. What, what’s your sort of reasoning and why do you not want him to have the vaccine?

I actually feel that he’s now stronger without the medication. I mean I have to, you have to kind of take into account the medication, a lot of the medications he had were almost like trial and error. They wasn’t sure what one was gonna work so they blitzed a whole load. And there was a few that he wasn’t that he was allergic to, but I’d not be able to say what ones cos they used maybe four or five at the same time. Yeah I just think he’s much stronger, maybe, I don’t know his constitution is much stronger without it. I know he needs medication sometimes cos if he does get the bad colds and virus and needs like a nebuliser or an inhaler, so much as I don’t like it helps him to breathe so to me that’s better that he uses it maybe once for the year or twice for the year, rather than using something every day or a few times a day.

Yeah. So only, he has those only when he’s acutely ill.

Yeah.

Yeah rather than

Yeah and I feel like I’ve kind of built up his, the strength in his body to kind of fight off more things and more things, cos there’s still one of the weller, that’s not really a word but you know one of the healthier premature babies for his gestation that I know cos a lot of his friends have been really unwell and they were born much later and they were just single babies as well. So yeah.

And it and do you think that with the flu vaccine as well, that he’s stronger to fight it?

Yeah.

That he doesn’t need the vaccine or?

Yeah I do.

Yeah and has that been easy to make the decision or?

No, it’s been actually been hard because

Really?

he was born so early, I actually wonder am I, actually every year I wonder am I doing the right thing? But yeah it’s been quite hard.

How do you make the decision? Talk to somebody?

I just go

Or research it? Or is it gut feeling or

It’s mostly really instinct and gut feeling. Cos if I talk to anybody I know, family, friends they will all tell me get the vaccinations.

Really.

But yeah it’s just kind of like my gut feeling.

No obviously in the winter when the first time she got flu when she wasn’t immunised she was really, really poorly, really poorly. I mean like she did not get out of bed for like a week. And she was so unwell and she’s quite a lively child and full of beans and I’ve never seen her.

Do you know how old was she then?

That was the first time. She was about 5, yeah, yeah.

And you said that she wasn’t given the flu vaccination before?

I can’t remember when she started getting it. I don’t think she did get it the first time cos I think the diagnosis was slow to come.

And obviously I do get her immunised every year so we’ve never had as bad a situation as that first one I would say. But she has, she has had it again since even though she’s been immunised although I think that does offer some protection it’s not, you know, obvious a 100% is it fool proof.

So last year would have been her first year and she had the, the sniff, you know the thing up the nose. Yeah.

The spray?

And this year she’s had it again, the spray up the nose. And then the family have had the injection and we’ve kept flu-free.

Ok.

Yeah

So what in your experience what are the pros and cons of having the flu jab?

Well I mean the fact that she’s now at school I would have thought this would have been a worse time for her. I was dreading it with all the coughs and colds that, you know, she’s around. And she’s been well. She’s, so definitely it’s definitely been good for my family this year. Whereas even last year I remember us having you know, coughs and colds. Evie had, Evie did have it up the nose last year but I do remember her being a little bit poorly with at least a cold last year, you know, common cold-like symptoms. Where this year she’s been really, as I say apart from her breathing her inhaler being a bit snotty, she’s kept well.

Ok

No temperatures.

So when you were told about the flu jab was it an easy decision?

It wasn’t initially an easy decision because I knew Daniel already had a, well not a phobia but he was scared of injections. He’d had the MMR vaccination at 18 months and he’d been quite upset about the idea of that. And he’d had to have blood tests taken at outpatient clinics. He’d had the grommets put in and he’d had a cannula put in, so he’d, he’d already experienced having injections and he didn’t like it. So there was the consideration of putting him through a traumatic experience of having this injection at an age where he didn’t really understand why it was beneficial to him. But then realising that it was something that could really improve his health in terms of you know not getting any more flu like illnesses, we felt that it was a traumatic experience worth going through.

It was initially a couple of years ago. We’d both had our flu jabs done and he particularly had a reaction in his arm – a big swollen red hard reaction.

Right

So that put me off doing it the next year. So, both him and myself we didn’t have it done for two years. And I can’t say that we particularly caught any extra infections through not having the flu jab. But equally, you don’t know if that sort of made a difference because you don’t know what you might have caught.

So, it’s very hard to monitor.

Sure.

But then, last year we did both decide to have the vaccination. I think we both had such a bad year of having various infections.

OK

That we felt our immunity was actually probably quite low so we were probably at risk of catching something anyway, so we decided to have it again.

And also, the difference with my child is that they now offer it in this area as a nasal spray for under eighteens.

Yeh

So both my children had the vaccination last year because it’s less invasive.

Yeh, yeh

And they were happy to do it.

Has the flu vaccine, the flu jab?

Yes.

And how is that. What do you think about giving him the flu jab?

Yeah, I mean, I wouldn’t, I don’t think twice. He’s, he’s kind of marked down as a patient as high risk. So he’s one of the first patients to be called for vaccine. And very fortunately they understand that [son’s name] has a lot of kind of invasive kind of injections, you know, invasive kind of cannulas and things like that so they offer us the flu, the nasal flu vaccine, sorry. So, it’s one less thing to kind of for him to stress or worry about, which is, I think it’s very important, cos I don’t you know, I think it would be, put me off if it was yet another injection, you know, cos he already had to deal with every other day, a cannula change on his buttocks or his stomach. So and as I explained earlier, he doesn’t, that’s the least, you know, his least favourite part of, you know, the care of diabetes is that painful kind of insertion of those devices.

In terms of the flu jab can you just tell me a bit more about the decision that he started being given that and at what age did he start having the flu jab?

He’s always had it I can’t.

Since he was a baby?

Yes I can’t, I think it was just decided you know Matias is, because of his disabilities recommended the GP I think put him initially on to the recommendation and saying that, you know he should they have a list of people that are certain conditions don’t they that I think, I think that they just and we said well that makes perfect sense.

Does he have the nasal spray or the injection?

He had for the first time this year was the nasal spray.

Yeah.

Yeah, yes he had the injection last year and this year was the nasal.

Hmm. Okay.

And again fine, nasal yes.

You are happy with him being on the flu jab?

Oh gosh yes absolutely we find it, I mean he does get the, he gets a reminder, we get the reminder through the post, I think I actually get text messages now as well, actually yeah we do. And I get it because I’m a carer so we both go together and just say, generally that’s what they do, they, you know,

So you have it for yourself?

At the same time yes so yes no, absolutely no problem at all. I mean it’s quite interesting actually because again when he had the injection last year he’s again because of his disability there’s one of these sort of benefits he there’s some suggestion with these, with Cri du chat children is that they don’t feel as much as their nerves are a bit sens-so pain conduction doesn’t happen as quickly. So we had the jab and he didn’t even bat an eyelid, he just kind of looked at the nurses doing it and oh, okay.

I wasn’t aware that asthmatic children were recommended to have the flu vaccination until Danny was probably about six or seven years old. So for the first about six years of him having asthma nobody actually ever said to us he could have a flu jab. And it was only when we moved to a new area in 2005 we moved to [place name] I think it was maybe 2006 was the first year that they suggested he should have a flu jab. They gave him a half dose of the flu jab.

Right so what did you, how did you feel about that?

I was disappointed because he, between the ages of 0 and 4 he had substantial issues with chest infections and pneumonias, he had numerous hospital admissions, particularly in the winters of those first four or five years of his life and it did then bring it home to me we could perhaps have prevented some of those admissions through having the flu jab earlier.

The flu vaccine thing has been quite a frustrating one for us because they first suggested he should have it must have been when he, the first or second time we were up in A&E. So he must have been around 14 months old, something around that age. And [ah] when I approached the GP she said she’d have to look into it more because of the egg allergy. And then she actually phoned me and said he couldn’t. There wasn’t an egg allergy-suitable vaccine for children and he couldn’t have a flu vaccine which was a bit disappointing and a bit worrying. And I thought, well that’s odd because surely the consultant who recommended it up at the [hospital] must have known if there was or wasn’t. So eventually I saw another GP but it, it took a while because first of all I took a while to think about it and then when I saw another GP about something else I said, Oh and by the way can I just check. And then I was told, No there was an egg allergy-suitable vaccine for children. But that it was a specialised thing and it would have to be ordered I think they said 12 and they didn’t need 12 in their practice. So what they would try and arrange was to order it with another local surgery and then, or even two and then split it. And so that took quite a few months of messing around. So I believe from memory that he didn’t have it for two years and then by the third time they had. I had to go and see them again and talk to a receptionist and ask about and the practice manager and ask about getting the vaccine in. And so then he had the, it was a jab which he had for a couple of years at the GP. But each time I had to contact the receptionist and say, Look it’s about that time could you please get it organised. And it would take quite a long time to sort out. But we, he did have it and then last year he was involved in a research project up at the [hospital] where they gave him the, they gave children with egg allergy the spray that all children now have, just the same spray as everybody else. And luckily that was fine. He didn’t have any adverse reaction to that at all. So they advised that this year he should be able to go to the GP under normal circumstances and have the spray that all children have. So apparently they’re not recommending that necessarily for all egg allergy children at this point but because he took part in the study and it was ok then it’s ok for him but they are still working through the results and the recommendations I think for all children with egg allergy.