Maria

Age at interview: 48

Brief Outline:

Maria’s daughter Jade has experienced several episodes of flu or flu-like illness since being diagnosed with Diabetes Type 1 at 6. Maria manages the episodes at home as much as possible and would like more information from the health professionals of how at-risk children may be affected by flu or flu-like illness.

Background:

Maria is 48 and lives with her husband and 2 children. She works as a quality manager. Ethnic background: White British.

More about me...

Maria’s daughter Jade was diagnosed with Diabetes Type 1 at the age of 6. She lost weight quickly, developed flu symptoms that she couldn’t shake off as normal and later on became very thirsty and needed to pee a lot. Based on a urine test, the family GP diagnosed Jade with diabetes straightaway and she was rushed to the hospital. At the time of diagnosis, the family received information about diabetes but nothing that explained the risks involved if Jade developed an acute illness like the flu.

Jade first had the flu a year after her diagnosis and has since had several episodes. Maria explains that a flu like virus has a big impact on Jade’s diabetes. She might lose her appetite and refuse food, making her blood sugars go “all over the place”, usually being “permanently high” during an illness. Maria has also noticed that many over the counter medicines, such as Paracetamol or ibuprofen, can have an impact on Jade’s sugar levels, making managing the illness episodes more challenging. Maria prefers managing flu illness at home as much as she can. Jade can get anxious about going to the hospital and Maria wants to avoid her having to go in unnecessarily. Maria also explains wanting to be as self-reliant as possible.

Over time, Maria has learnt to recognize the flu symptoms early and as Jade has grown older she can also communicate when she’s feeling more unwell. With time Maria has also learnt helpful tips of how to manage the diabetes better during a viral illness, for example by giving liquid carbohydrates to a child refusing food. She has found talking to other families with diabetic children incredibly helpful.

Maria encourages other parents to try pick up flu symptoms as early as possible and reminds parents of other at-risk children to be mentally prepared for such things to happen so they won’t come as a surprise. Jade was not routinely offered the flu jab and Maria had to make sure the GP surgery would remind them appropriately about it every year. She would like health professionals to be more forthcoming with information about the impact and management of flu-like illness in at-risk children.

Jade had a fever and felt too ill to get out of bed.

And you know she’d sort of had a bit of a cold but then she got to the stage where she was very feverish, she couldn’t walk anywhere, I mean she just couldn’t get out of bed, and that is very unlike Jade because even when she’s normally unwell she will still venture out eventually. But she didn’t. She didn’t want to move anywhere, and every time she said, every time she walked her head felt like it was going to fall off, you know, or cave in. It was like terrible. And when she was able to I took her to the doctor, and they said, “Well she’s obviously, she has a temperature but also they believed she had sinusitis because of the pressure in her head and face. 

Maria who has training as a scientist, wished she had been given more information from the start. She felt she had been ‘drip fed’ information.

So how much did you know or were you told about the impact on diabetes on her life and your family life and sort of then thinking about things like her becoming ill with the flu or with sort of vomiting bug or something like that. These sort of things. How much were you told at that time?

Nothing.

There was nothing about that, and I sort of in hindsight when I look back at that time I think I wish you’d told me that something about that when I was there. But then I think to myself would I have, with everything that was going on would I have retained that information. I would have had a sense of it, but the detail I probably would’ve lost. But the one problem I have is that maybe they tar everyone with the same brush, because I think for me I’m quite capable of taking on quite a lot of information, and I would have stored it in there you know. Okay it may have taken a little bit to bring it back to the very forefront but there are things that I think to myself I could have handled that so much better had I known it before. So it’s only when you go to your clinic sessions or you read something or you know, or you ring them up and say “Oh this has happened, what do I do?” And they just say, “Oh just do that.” 

Was this the same as well for infections ‘cos you said you’ve learnt that they mess up the regime for her insulin regime, is that, how did you find that out then, that you know if she got an infection or something that’s how it impacted her?

Yeah I mean it was only because she’d be, her blood sugars were running high and I couldn’t seem to do anything about it, so I’d ring up and say, “What do I do?” And they’ll say, “Well what? You know has she got any symptoms?” blah, blah, blah. And they would say, “Oh, it looks as though she’s got something wrong with her, she’s got a cold or a cough, snuffles or a sore throat or something like that, ‘cos classically Jade seems to say, “I’ve got a tummy ache,” for every sort of ailment you could imagine. She’s always got; it’s just a tummy ache. And that could be, I know now that that could be meaning that next week she’s gonna come down with something. 

But in the meantime like we have, funnily enough in the last few days, and it, and you think well is it ‘cos she’s not at school whatever, but her blood sugar is like almost unmanageable, it doesn’t matter how much insulin I give her, it doesn’t matter what she eats, it just keeps going high, you know. So to me, and that’s when I said I’ve rung up and said, “I can’t get her blood sugar down, whatever, I’m doing this, I'm doing that,” “Oh right well what you can do is you can give her more insulin,” or whatever. And then you say she’s had actually I don’t think she’s ever had diarrhoea and vomiting, not for any length of time that’s, you know and we only found out very very recently when we did carb counting, they said, “Well what do you do then if this happens? If your child isn’t eating or drinking and you need to give insulin? Because if they keep running high it’s dangerous, yeah? Which you know, but we didn’t know the answer to that question. I didn’t know what I should give Jade and that I could give her liquid glucose type thing and then give her the appropriate amount of insulin, it’s only recently that we’ve been even allowed to understand carbohydrate counting.

And I keep, I kept telling them, “Look, you know I have a background knowledge in food science. If you just show me what I’ve got to look at I will learn it for myself.” But they just wouldn’t, didn’t want to tell me, and I was thinking, “Why won’t you tell me?” And I don’t know whether it was because they thought, “No, you need to hear it from us. Then we know you’ve got the right message.” But anyway very soon after I sort of made the comment I think I really need to understand this carb counting thing so I know how much insulin I should be giving her with her tea, ‘cos at the moment that is the only insulin, because it’s so quick acting, that you need to know how much you’re eating and how much, because before that they just said, “Give her six units,” regardless of what she was eating.

But you know which isn’t that useful is it? So yeah it’s sort of that I sort of put it down to sort of being drip fed, you get it when you need it at that time that’s appropriate and not being bombarded with it at the beginning, which I sort of understand but then again perhaps there could have been something that you could look at later, once you’ve had time to assimilate the first bit of data. 

Maria can work from home when her daughter is ill so she can look after Jade but still keep on top of her work.

And so that she could be near me, I could work in the next door room. I could see her, she could see me.

Yeah.

And she didn’t have to walk up and down the stairs. So we found somewhere nice and comfy for her, she’d got a TV and she can just turn it on and off when she liked, or not have it on at all, just sleep and rest. And I could keep a very close eye on her and still function and do my, some of my job. Because that’s the other stress is when you’ve got to be off work,  you know, to keep the money coming in.

Yeah. Yeah.

And not get behind, and sort of the job that I do I am the only person who does my job. So if I’m not there it doesn’t, nothing happens.

So I, you know it’s always a constant thing that I, you know I need to be on top of it. So that means if I can look after Jade and still dabble with my job, okay I’m not functioning at the highest level I could be, but I’m still in there,  and it takes the pressure off me.

Yeah, at the same time.

At the same time. And then you know then I can be there for Jade and sit with her and have a chat to her and make sure she’s okay. So those sorts of things.

Yeah.

Help and I’m sure that must improve the person’s ability to get over things if they’re not stressed themselves, or worrying what everyone else is up to and you know, so yeah I think that’s one thing that we managed to do to keep her comfortable and recuperate.

Maria says try to pick up on changes in your child’s symptoms early.

Yeah I think, well just speaking as a parent I think that your child will be telling you by their body language and how they are, what, how bad it is to a degree. And be driven by, be driven by that as to what your action will be. And try to pick up on as much as you can on things early, and be ready in your mind for any eventuality or these eventualities because it’s so easily can go from a little bit of a cold to a full blown something else and you know then you’ve got to start worrying about how you’re going to control their condition.  But okay don’t take it for granted that your surgery will remind you when you need to have certain things that will help your child,  either not get these things or get them quite so badly.  I, I made that mistake I think.