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Louise

Age at interview: 37
Brief Outline: Louise’s elder son, who is now 7, was diagnosed with type 1 diabetes at the age of 2. Her son received an insulin pump 6 months after his diagnosis, which has helped them monitor and manage his blood sugar levels. They usually check his blood sugar about 20 times a day, typically before and after meals, exercise, sleeping, or when he feels unwell. When he falls ill with a flu-like sickness, Louise’s primary concern is to manage his blood sugar levels. Over the years, Louise and her husband have become experts in managing their son’s condition, but they had to take an exceptionally proactive role in order to receive proper care for their child.
Background: Louise is a part-time teaching assistant in a primary school. She is married and has two children, aged 3 and 7. Her partner works as a full time clinical analyst. Ethnicity: Latin American.

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Louise’s eldest son, who is now 7, was diagnosed with type 1 diabetes when he was 2 years old. Louise thinks that from the outside, he doesn’t look like someone who is living with a chronic condition, but the family puts a lot of work into “keeping his health on […] top form”. Her son received an insulin pump 6 months after his diagnosis, which has helped them monitor and manage his blood sugar levels. They usually check his blood sugar about 20 times a day, typically before and after meals, exercise, sleeping, or when he feels unwell. Louise feels that since there are so many factors that affect her son’s blood sugar level, it is “extremely challenging” to manage it well. The local council granted them funding for an assistant at school, who monitors her son’s blood sugar levels. Louise thinks that every child with diabetes should have the right to have similar assistance at school. There is always the danger that her son’s blood sugar level suddenly drops, therefore they also keep a glucagon pen at school and at home for such emergency situations. Fortunately, she found that her son is “in tune with his body”, and he knows when his blood sugar levels are low. Generally, for Louise and her family, managing her son’s type 1 diabetes is “a lot of hard work and it’s very complex”. However, her son “doesn’t know a life without it”, so the day-to-day difficulties of the management don’t bother him yet.

Since Louise monitors her son very closely, she knows immediately when he develops a flu-like illness. Over the years, she has learnt that her son’s blood sugar levels are less sensitive to insulin when he is ill, therefore she has become more confident with administering insulin in these cases. She feels that when her son is ill, managing his diabetes remains her primary concern, firstly because normal blood sugar levels are necessary for him to recuperate. Secondly, she feels that managing his blood sugar is also a much bigger challenge when his immune system is weak. His flu-related symptoms usually pass within a week, but it takes another week for his blood sugar levels to recover. It is also a further challenge for Louise and husband that their son cannot take any sweetened medication, and since most cough syrups have added sugar, their treatment choices are limited. Managing her son’s diabetes when he is ill is also physically taxing for Louise and her husband because it requires them to check his blood sugar every two hours during the night. Louise feels that she and her husband have “become [their] own doctors” over the years. At the beginning, when her son was diagnosed, the doctors gave her a table with instructions on what to do if her child fell ill. Louise remembers finding the table overwhelming and complicated initially. Now, five years later, she feels that she has a full grasp on these “sick day rules”.

Generally, Louise and her husband have a good relationship with their health professionals, but that’s because she has researched her GP and asked to be moved to a different hospital in order to get sufficiently high quality care for her child. She found that doctors ask for her opinion because they are aware that she knows most about managing her son’s condition. She also trusts the doctors’ advice with regards to antibiotics. Besides health professionals, Louise gets her health related information via the internet, from overseas parents and consultants. Reading various online forums has made her aware of available treatments that are not on offer in the UK.

Louise had to give up her career in publishing to be able to care for her son because back when he was diagnosed, nurseries weren’t legally obliged to provide the necessary extra care for children with chronic illnesses. Louise finds that the health and public sector’s awareness of diabetes has improved a lot in the past five years. However, she thinks that parents caring for children with diabetes need to be more aware of their rights. She would also welcome for sophisticated “sick day rules” that outline blood sugar level trends during various illness episodes.
 

After five years of parenting a child with Type 1 diabetes Louise sees changes in blood glucose before the illness begins.

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After five years of parenting a child with Type 1 diabetes Louise sees changes in blood glucose before the illness begins.

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Five years on, I think I can really clearly identify when my son is gonna get ill. I would say the only advantage, not that there’s many advantages to having Type 1 is because you monitor so closely the blood sugar levels and things, I can tell when they are running high and I can, before any obvious symptoms appear, I can see that there is a problem. If there’s no obvious explanation as to why the, the numbers, the blood glucose levels are going high. So, I will, you know, I will always have that kind of alerts, you know what I mean? Kind of, I will be on high alert and then three days later, for instance, the symptoms of a cold, flu, whatever illness will appear and then I can say, ‘Oh, I understand why now, you know.’ So I had that pre-warning which is helpful, I would say. 

And what are his symptoms when he gets the flu? Is he feverish?

Yeah, pretty much kind of like any average child it would be kind of runny nose, high temperature fever, kind of cold as well, sweaty, achy bones, yeah that kind of thing. 

Now that I changed the position. 

Just sort of one other thing, loss of appetite. 

And so, on a typical episode of having a flu, is there a pattern on which the symptoms develop or no?

I found that I had, my son suffers from high stubborn blood sugar levels three days before the onset and then on the third day, symptoms appear and, and yeah, it can last quite a long time, I think.

He can develop something, cold sores. And that is already a signal to me that he’s going to become unwell, cos I can see that, you know, his immune system is down. And yeah, often is the case that he’ll have some type of virus. 

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. 
 

Managing her son’s insulin needs when he has flu-like illness is difficult and it takes a while for his body to adjust.

Managing her son’s insulin needs when he has flu-like illness is difficult and it takes a while for his body to adjust.

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But, yeah, it is quite hard work when he gets ill, because mainly the main drain on the family and it is a drain on the whole family is the night time checks. I have to check him through the night, because to keep those, there’s no chance of him recuperating, unless I can keep those blood sugar levels down and normal, cos then the body is battling two different things. It’s battling the highs and potentially going into diabetic ketoacidosis, and at the same time has a virus. So you don’t, you want to remove one element so to give the body a chance to fight the other, do you understand? So I have to try my very best and insulin needs a requirements can quadruple, you know, they go so high and it is a constant firefighting of kind of increasing the dose finding, you can get advice six day rules from the consultant and really you have to just, you can’t really follow it to the letter, because every child is different. So I need to kind of just take that as a basic template as what how to cope and then experiment. You have to be very aggressive with the insulin and try and bring the blood sugar levels down. 

Now, how long does it take for, for the diabetes to get under control, following a flu or flu-like illness episode?

It really takes a long time. So, we have high blood sugar levels prior to the flu kind of being kind of noticeable. And then we have high blood sugar levels in duration. And when he starts to pick it up his insulin needs drop dramatically and they go back to kind of the normal requirements. So that adjustment, from being on sick day kind of insulin needs to kind of normal needs is, is quite tricky one. And I have sent him to school for instance, after a bug thinking he’s been a week off, he’s fine now and he looks fine. Sent him to school Monday, but him suffering from continuous lows all day, because his body is still kind of, I don’t really understand it and is probably something a consultant can answer. But it’s gone, he’s gone from needing so much insulin to requiring less and the body is still adjusting to that.
 

After flu-like illness, Louise explained that her son’s insulin needs changed dramatically and it was hard to get ‘back on track.’

After flu-like illness, Louise explained that her son’s insulin needs changed dramatically and it was hard to get ‘back on track.’

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Cos I compare him to his younger sibling and see, cos they often get ill together. So, I find obviously my younger son who has not got a chronic illness, he recovers very quickly. Whereas my other son is probably still unwell while the other one is sick. So, and also what I’ve found with my son, my eldest is that he can appear to have recovered, but then can quickly fall down with another virus. So his immune system takes a long time to get back on peak. 

So roughly how long do you think before he’s sort of kind of his, his normal self.

Probably two weeks.

Two weeks.

Yeah, yeah.

You think those two weeks-

Probably a week of full blown, blown flu, sorry. Three days beforehand and then the week, the week after I would see, oh, he looks better to, to you or I, but really his insulin needs have changed dramatically and I still have to be really, really vigilant about yeah.

Sorry, it is sort of kind of more than two weeks.

There’s like a trail, yeah. And I mean, there has been times he’s been like a week off with a, with a bug. I’ve sent him to school for a week, but because that week, I didn’t manage it properly, he was unwell the following week, so it lasted a whole, nearly a whole month. So, yeah, that is, it can last quite a long time. 

And you can see that because of his insulin needs.

Yeah, suffering lots of hypos. Looking drained because he has no energy from the hypos. Yeah, it’s quite hard to get back on track. 
 

When Louise’s son has lost his appetite they give him high sugar drinks to raise his sugar levels so that they can give him insulin.

When Louise’s son has lost his appetite they give him high sugar drinks to raise his sugar levels so that they can give him insulin.

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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. 
 

Louise says that explaining her son’s insulin needs and how to use the insulin pump to the Accident and Emergency doctor is stressful when she wants his care to be fast. They now manage his care themselves at home.

Louise says that explaining her son’s insulin needs and how to use the insulin pump to the Accident and Emergency doctor is stressful when she wants his care to be fast. They now manage his care themselves at home.

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His diabetes team has made you aware that you might have to call emergency or take him to hospital.

Yes, yes. And we have done in the past. And another challenge is going into A&E where A&E doctors are not familiar with insulin pumps. So, you’re trying to educate the person that’s trying to treat your son, and that is frustrating. But you wouldn’t expect an A&E doctor to know about all the medical equipment anyway that exists in the world. But still, at that time when you’re stressed, you want immediate treatment and you want the care to be fast. Having to explain everything again to a doctor is quite hard. But now we’ve become our own doctors, if you like. You know, we find that going to hospital hasn’t necessarily been very helpful in that, you know, they’ve waited an hour or two to see if his blood sugar levels have come up. You know, they’ve yeah and we kind of copy, you know, what they’ve done and, and treated him at home and we have, you know, we have less hospital visits now, because we’re, we know what to do and we’re less kind of worried, as it were. 
 

Louise feels one hundred per cent involved in decision-making with her son’s consultant.

Louise feels one hundred per cent involved in decision-making with her son’s consultant.

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My, our consultant is a professor and he’s one of the top consultants in the field. And he tells me all the time, ‘you’re the expert’. The parent is the expert. We live with it 24/7. So a doctor or nurse, they do not understand, because they do not live with the condition. They haven’t got as much hours of experience as a parent or the actual person, you know, the patient. So really, they all the time tell us, tell us what you think. What do you think? They listen to us. And in the end you become your own kind of, you self-treat and you manage, you learn how to cope with different scenarios. Obviously, with, with the nuggets of information they’ve given you. But really we become our own doctors. 

And do they consult with you if there is a sort of a change of treatment or if they want to do-

Yeah, consultant’s definitely is working together with me as the mum, the carer, you know, the primary carer.

So do you feel involved in decision making?

Yeah, 100%, yeah, yeah. 
 

Louise increases her son’s fruit and vegetable intake, makes sure he has enough sleep and rest and keeps her son off school if he is getting run down.

Louise increases her son’s fruit and vegetable intake, makes sure he has enough sleep and rest and keeps her son off school if he is getting run down.

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For us it’s just the diet, really. I do give vitamins as well, but I’m not sure whether they really make a big impact. But I think diet, increasing fruit and vegetables. Making sure they get a good night’s sleep. Seeing, trying to find out when they’re feeling you know, looking a bit unwell or tired and not trying to push them too much to do stuff. You know, cos we’re quite an active family. So making sure that they rest and yeah, I mean, I wouldn’t hesitate to keep [son’s name] off school if I felt that, you know, he was, you know, he starts to develop these little signs like I mentioned previously like little cold sores here and there. So I can kind of tell when he’s a bit run down. 
 

Having the flu vaccine by nasal spray has made it easier for Louise’s son to have the vaccine.

Having the flu vaccine by nasal spray has made it easier for Louise’s son to have the vaccine.

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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. 
 

When Louise’s son has flu-like illness, she has to check his blood sugar levels every two hours through the night. She says it affects the whole family and “everything comes to a standstill.”

When Louise’s son has flu-like illness, she has to check his blood sugar levels every two hours through the night. She says it affects the whole family and “everything comes to a standstill.”

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And it’s extremely draining on the whole family. And everything comes to a standstill, you know, family plans, days out, you know, not just for me or my son whose unwell but my other son, you know, my partner. Everything has to stop. And I think we just concentrate on getting my son well, because checking him through the night every two hours is just beyond exhausting and I can’t tell you. I think that’s probably one of the worst things. But nobody really tells you upon diagnosis, the night checks that you do. That is you know.

And this is sort of when he’s, apart from this one, it’s when he’s ill that you have to check every two hours. 

Yeah, yeah, the main advice for their consultant is every two hours and that’s day and night. And, even if it were a flu or the gastro where it’s low blood sugar levels you have to both check, any sick days it’s two hours through the night.
 

Louise is cautious about sending her son back to school after flu-like illness. She has learnt from experience that even though he looks well, his insulin still needs to be monitored and adjusted.

Louise is cautious about sending her son back to school after flu-like illness. She has learnt from experience that even though he looks well, his insulin still needs to be monitored and adjusted.

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Now, how long does it take for the diabetes to get under control, following a flu or flu-like illness episode?

It really takes a long time. So, we have high blood sugar levels prior to the flu kind of being kind of noticeable. And then we have high blood sugar levels in duration. And when he starts to pick it up his insulin needs drop dramatically and they go back to kind of the normal requirements. So that adjustment, from being on sick day kind of insulin needs to kind of normal needs is, is quite tricky one. And I have sent him to school for instance, after a bug thinking he’s been a week off, he’s fine now and he looks fine. Sent him to school Monday, but him suffering from continuous lows all day, because his body is still kind of, I don’t really understand it and is probably something a consultant can answer. But it’s gone, he’s gone from needing so much insulin to requiring less and the body is still adjusting to that. So, it’s all about being quick, you know, recognising these trends and seeing or have to kind of change the settings on the pump pull back the insulin, feed him more carbohydrates, so yeah, it is, you know, I’ve been more cautious about sending him back to school even when he looks well, because even though the symptoms have disappeared and he appears well, it’s still the adjustment of a different needs, if you like, yeah. 
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