Jessica and Kristian

Brief Outline:

Jessica and Kristian’s daughter was diagnosed with Type 1 diabetes when she was 9 months old. She has experienced one major flu or flu-like illness when she was about 1. They try to manage episodes of acute illness, like ILI, at home whenever possible.

Background:

Jessica and Kristian live with their daughter who is 2 ½ years old. They are both self-employed. Ethnic background: White British.

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When Jessica and Kristian’s daughter was only 9 months’ old, she developed a flu or flu-like illness which health professionals initially thought to be tonsillitis or the norovirus.  However, Jessica and Kristian felt that there was something more going on. Her condition deteriorated so they went back to the hospital; whilst waiting to be seen she rapidly became much worse. She was diagnosed with Type 1 diabetes and had developed a dangerous state of diabetic ketoacidosis (DKA) and had to spend 48 hours in critical care. Her diabetes was difficult to control at first but a year into her diagnosis things started to stabilize.  Jessica and Kristian explain that their daughter is still sensitive to many things, such as life changes, new events, changes to her routine, and colds and viruses. 

Jessica and Kristian’s daughter experienced an episode of a major flu or flu-like illness when she was about 1. Her symptoms followed the usual course of a viral illness: high temperature and high sugar levels, followed by becoming snotty, suffering from a tight chest, feeling grumpy and sleepy, tonsils went up, sore throat and loss of appetite. Initially, they managed her fever at home with Paracetamol and ibuprofen. They were also trying to manage her insulin levels by monitoring her blood sugar levels every 1 to 2 hours as they can become quite erratic and unpredictable. Additionally, they checked her ketone levels regularly and tried to help her rest. Jessica and Kristian waited 48 hours to see if her condition improved. As her condition did not change they contacted the hospital where they spoke with with the on-call consultant. The GP does not really play a role in their daughter’s diabetes care or acute illnesses, as she requires more specialist knowledge.

Jessica and Kristian have concerns about the overuse of antibiotics and prefer to try and weather a viral illness without antibiotics whenever possible. They also avoid being a round other people who might have a viral illness. Jessica and Kristian explain how they share the responsibility of caring for their daughter during an acute illness or when her diabetes is proving difficult to control. Jessica and Kristian say that they are very lucky that they have flexibility with their work but do often have to think carefully about what work projects they are able to accept considering her health and wellbeing. When their daughter is ill, both parents try to stay at home. They try to lead as normal life as possible and not restrict what they do as they do not want their daughter to feel different to other children. Their daughter has recently started nursery on a part-time basis, and they are seeing how things go. 

Her two year old daughter’s blood sugars are high when she has flu-like illness and she can be ill for two weeks.

The sort of issues to do with that, with the diabetes are obviously that you’re battling the normal virus but on top of that you’re, you desperately know that she can’t battle it if her blood sugars are high, and so that if her blood sugars are high that’s making her feel ill on top of the illness being ill, because she’s doubly ill. And yes she always takes a long time to get over it.

Right. How long would you say?

I would say a couple of weeks.

Whereas we’d be, it might be something that we’ve both had and it would give, it would be a, we’d have it for three days or whatever,

Yes

And obviously then sort of her have it for a week, I mean I know a lot, that it can be two weeks but I’d say that she can actually be pretty rough for two weeks.

When her daughter is ill she needs to have her insulin increased but getting the right amount can be difficult.

So you do find yourself, you know, if during the night on, on a normal day, if she’s a bit high you will give her some extra insulin and then you know we’re quite comfortable leaving it a few hours before you check her again because you know in the normal run of events that insulin will do its job. But you know when she’s ill we’ll up an awful lot more because you, you don’t, you’re not really confident on the affect that you know the insulin that you’re giving her is, is going to have, so you feel that you need to kind of, you know keep much more of a like a, a constant eye on it.

Yes. When you’re, when you’re ramping the insulin up because she’s ill you have to do it in sort of increments, because you again, you daren’t, daren’t go up a large percentage.

If you go up too much. Or it takes as, in, as sometimes happens it, the thing is a 24 hour thing and it goes really quickly and, and then yeah you make her go low. So you sort of go up in sort of ten percent’s, and sometimes you’ll, it’s awful because you’ve, you feel like you’re battling it.

Just because you just, or because you don’t actually know how much you need to give her, so you’re just going up ten, fifteen percent, oh no that’s not, and then checking her again an hour later, that’s not enough; checking her again an hour later, . So it’s, imagine that, yeah, it’s times like that the next morning we’re all, we’re all shattered and don’t function at all.

If her daughter has just got over a cold, she avoids her having contact with others who have colds because she ‘can’t go through that again just yet.’

Mother: I do, I suppose there’s also a thing we do, which you might do anyway I suppose, there’s things like you know somebody else has got a cold and you, she’s in the process of getting over it, you know I’ll, I will try and avoid.

Yes, yeah.

Mother: For a while because I just, you know or if she’s just got over it and I know somebody else has got a cold I’ll just say, “Look I can’t,” you know I know she’s got to get colds to build up her immune system but because it is doubly bad for her and us when she has one, well you just think I can’t go through that again just yet.

Yes.

Mother: So it’s at times like that and you do wrap her up in cotton wool a little bit more.

Father: Oh and we seem to pass it round each other first. You know there are times when it just sort of, it seems to go in this merry go round of illness.

In the family mm.

Working for her sister gives her the flexibility to go in later in the morning when her daughter is ill. She is aware of other parents who have had to give up work, or go part-time.

But I was going to say that, that’s good, something, I’m lucky enough that the job that I, my day to day job I work for my sister and her partner in an office, and obviously this is her niece and she is incredibly understanding.

Yeah.

And so should I not go into work I usually, the office is open from 10 till 6 and I go in 11.30 every day. And they are very kind and let me do that. I work till, I don’t take a lunch break, if I can get away, you know I’ll go and get a sandwich but I tend to just sit at my desk and work through it, but the amount of Mums I know that are on the forum, I don’t know them but through this, there is an enormous amount of people who have had to either go part-time or give up work. And then with young, because the children are young, so young with the diabetes and I realise that I, we are actually very lucky that I work for my sister so there is an invested interest for her, you know. And because in most other jobs I'm sure a lot of employers would say to me, “If you can’t make the hours you’re going to have to go.”