Posted on 12/06/2018

My child’s “sickness bug” was actually diabetes

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My child’s “sickness bug” was actually diabetes

Diabetes. One small word that can have huge implications on a person’s physical and mental health. But if your child is diagnosed, it can also massively impact family life.

This is the story of the Whinkless family’s experience of diabetes, told by Sarah, who is mum to 10-year-old Finley (Fin) and 8-year-old Noah. Sarah and Fin shared their diabetes journey with us, which began with strange symptoms, a traumatic, life threatening condition, and eventually a life-long diabetes diagnosis.

Diabetes explained

Diabetes is a complex condition, caused by how the body handles insulin production. Insulin is essential to the human body, because it regulates the levels of glucose (sugar) in the bloodstream – too much glucose may lead to damage to the blood vessels. People with uncontrolled diabetes are at higher risk of complications such as sight loss, foot amputation, stroke, heart disease, chronic kidney disease, and many more health conditions. Type 1 diabetes occurs because the body’s immune system mistakenly kills off insulin producing cells, making the pancreas unable to produce insulin (or enough insulin) to regulate blood glucose. People with type 1 diabetes have to take insulin and monitor their blood glucose levels throughout their lives.

“We should have spotted the symptoms.”

Finley was a happy and healthy child up until January 2017, when his life changed forever. Type 1 diabetes is often diagnosed in childhood, but symptoms are notoriously difficult to spot and often explained away initially as a variety of other, far more minor, health conditions. Finley’s symptoms had begun to creep in slowly for a few months but, like many parents, Sarah and Craig (Finley’s dad) thought they were due to his age. Sarah explained:

“In a few months, Fin lost over a stone in weight – yet he never stopped eating! We put this down to a growth spurt. He is naturally really skinny, so we let him eat what he wanted, but we couldn’t seem to fill him up and the weight loss continued. We didn’t notice his symptoms slowly creeping in, and looking back we could have spotted the symptoms well before he was hospitalised.

“He started drinking pints of iced water because he said he had a sore throat (but it wasn’t red or swollen). He was peeing loads but we put that down to all the water he was drinking. He looked tired all the time but he would never admit it in case we sent him to bed early! He’s a sweet, calm-tempered boy usually, but he was having massive anger outbursts and mood swings, which is just not in his nature. We knew he was acting strangely… but we never expected what was to come next.”

The words a parent never wants to hear

The family celebrated a fun and happy Christmas at the end of 2016, but then the new year took a terrible turn when suddenly, on 2nd January 2017, Finley developed what his GP diagnosed over the phone as a ‘sickness bug’. Little did Sarah and Craig know, by the following day they would be experiencing every parent’s worst nightmare: an extremely ill child in hospital…

“Finley was really poorly – he was being sick, he was feverish, and not himself. We explained all his symptoms over the phone to the GP but couldn’t get an appointment until later in the week. We are still angry about this misdiagnosis, as he was actually displaying classic symptoms of diabetes, and if this had been picked up on, we may have avoided what was to come.

“The following day, Finley got worse and worse. He managed to keep some paracetamol down and fell asleep, but when he awoke six hours later, his eyes were sunken and black and he was drifting in and out of consciousness and then collapsed on the bathroom floor! At this stage, all we could think was that he had severe dehydration from the extreme vomiting. We rushed him straight to A&E.

“At the hospital, the A&E staff took one look at Finley and before they had even taken his details, they whisked him away from us. The nurse explained quickly that they’d taken him to resuscitation, the words a parent never wants to hear. This was serious. “What is happening to my son?” “Is he going to die?” I had so many questions and fears going through my head.

“The doctors and nurses were desperately trying to figure out what was wrong with him, whilst all we could do was watch and wait. All the monitors were going off – I have never been so scared in my life.

“They couldn’t get a blood sample from Finley as he was so dehydrated and thin. Finally, a doctor leaned over, smelt Finley’s mouth and said ‘he has sweet breath’. This could only mean one thing… diabetes.”

Finley was actually in diabetic ketoacidosis - a life-threatening, emergency condition caused by unmanaged diabetes and a severe lack of insulin, which had led to consistently high blood glucose (sugar) levels. Finley’s body was unable to break down the glucose in his blood to use it as energy, so his body had started to find alternative energy by breaking down other body tissue, such as excess fat and muscle, resulting in the release of ketones. These poisonous chemicals gradually built up in Finley’s body, causing it to become more acidic which, if left untreated, would have been fatal. Finley’s strange symptoms now all made sense – he had type 1 diabetes.

“We now know that weight loss, extreme hunger, excessive thirst, excessive urination, tiredness, anger, mood changes and sickness are all symptoms of diabetes. The weight loss was the most alarming symptom and resulted in Finley being just 3st 3lb at the time he was admitted to hospital. His body wasn’t producing insulin so his body was breaking down his own muscles and fat. I will forever feel guilty for not having realised what was wrong, and for not joining the dots. I work in drug safety so I should have seen it – I should have known. Until the day of the ‘sickness bug’ though, he hadn’t seemed ‘ill’, just a bit run down.

“Burton hospital were amazing and saved Finley’s life, for which we will be eternally grateful. The doctors and nurses, and the support we’ve received there has all been truly outstanding.”

“How the hell do we look after this child?”

Finley’s condition gradually improved over the next 48 hours as the treatment began to work, but whilst the initial drama and danger had subsided, Sarah and Craig were left with a whole host of questions, fears and new challenges ahead. They now had to come to terms with what had happened and what ‘diabetes’ would mean for Finley and their family.

“Craig and I were like rabbits caught in headlights. Fin’s younger brother, Noah, was scared to death! When he first saw Finley in hospital he was ecstatic and relieved to see that his big brother was ok. He hugged him, instead of the usual punch. We were all in shock at the start.

“I remember when Fin came round and we tried to explain what was wrong with him. Diabetes is difficult to explain at the best of times, let alone to a child. When Finley heard he had to have injections every day, his reaction was ‘my life is over!’. However, he often says this when he loses at his favourite computer game ‘Fortnite’, so we took this with a pinch of salt and realised he would adapt in time, just like we all had to.”

Treatment for diabetes will usually require insulin therapy, since the person’s body does not produce it effectively. This is not as simple as taking pills and often requires multiple injections through the day, as well as continuous monitoring of how much glucose is in the blood. Finley, Sarah and the rest of the family, had a lot to learn to manage this new condition.

“I stayed with Fin in hospital and we had a steep learning curve. We had so much to understand and we had to take it all in quickly – we had no choice, this was going to be part of our lives from now on. In the space of a week, we’d learned how to lance fingers, check blood glucose and ketone levels, calculate insulin corrections to get his blood at the ideal level, carb count and calculate how much insulin was needed every time he ate food.

“When Finley was discharged from hospital it was like going home with a newborn baby. You sit there and say ‘how the hell do we look after this child?’ – that’s exactly how we felt about diabetes. It was a huge responsibility and stress. However, with time and support we got there. The diabetes nurse was on call at each meal time to check our calculation. After a few months we slowly got the hang of it ourselves.”

A day in the life of a diabetic child

Diabetes requires constant monitoring and treatment – there is no cure and so a diabetic has to come to terms with a new way of life after their diagnosis. Sarah told us about the intensity of Finley’s condition, and how it affects his entire day, as well as her and Craig’s nights.

“Finley got to grips with checking his blood very quickly, but injecting himself took a bit longer. He got there in the end and we are very proud of how he has handled all of this. He quickly learnt how to identify when he was having a hypoglycaemic (hypo) attack e.g. feeling dizzy, shaky, unable to think straight, and he could also feel if he was hyperglycaemic (hyper) episode e.g. feeling unexplained anger/rage.

“Finley has to check his bloods when he wakes up, every time before he eats, two hours after eating and during and after exercise. If he feels as though he might be having a hyper or a hypo he also checks his bloods. Overall, Fin pricks his finger and checks his bloods around 10 times per day. Craig and I take it in turns to get up and check his bloods in the night. If he is unwell, we have to carry out extra checks because a simple infection in a diabetic can become serious very quickly due to the impact on glucose fluctuation.

“In total, Fin has between four and six insulin injections a day. He has help calculating his insulin at the moment, but we are gradually trying to get him to take responsibility for this himself. Currently, he gets himself breakfast and administers his insulin without our assistance or assessment, which is a massive achievement.”

Diabetics have to control their condition to avoid facing complications with their health, but many parents find it difficult to ensure their child understands the consequences of not managing their blood glucose levels and to take responsibility for their own health and wellbeing. Finley has days where he will try and rebel a little against the rules and his constant health checks.

“Sometimes, he says he has checked his blood glucose levels but really he hasn’t and then he has a hypo. He has even admitted recently that he likes feeling a bit hypo (it feels a bit like being drunk). All we can do is monitor him, and ensure he understands that he is harming himself by doing this – I often reiterate to him that hypos can result in a coma. Eventually he will grow out of it.”

Diabetes also affects Finley’s education and his experiences in and out of school, but his friends are a great support to him and he tackles negative attitudes towards his health head on.

“Fin’s school have tried really hard to help accommodate his needs. They had to have a lot of training to understand diabetes and how to help him manage it, which they received no funding for. His school work has suffered significantly as he lost all motivation, so he had to start extra tuition which has helped, plus his school have worked hard to get his marks back up.

“Finley’s friends have all taken an interest and asked questions. They always keep an eye on him. He had a really bad hypo at lunch time once and was close to passing out. One friend sat with him while the other friend ran to find an adult. He’s really lucky to have friends that care.

“Fin deals with unthoughtful comments with his dry wit. If someone says: ‘I couldn’t inject myself every day’, Fin’s reply is ‘Ok, well you would die!’. Or if someone asks ‘Have you got diabetes because you ate too many sweets?’, Fin would say ‘No, my pancreas hates me and stopped working’. Once, someone asked him ‘Have you got diabetes because you are fat?’ and Fin replied ‘I think you need to go to Specsavers!’"

Facing the future

Without a cure, Finley will live with the effects of diabetes for the rest of his life, but there is now lots of technology out there that can make managing diabetes a little easier, and Sarah has researched these to find a solution that may help Finley and the family to keep track of his blood glucose levels.

“We want Finley to start using a Dexcom. This is a device that sends his blood glucose levels directly to his/our phone, and alerts if they are too high or low. This would be a godsend, especially when he goes to high school as he will have less adult support. Unfortunately, this is not available on the NHS so we will have to fund it and it is expensive.”

Naturally, Sarah is anxious about Finley’s future, and is keen to raise awareness of diabetes to help people recognise the symptoms early-on.

“I worry for him, a lot. I wish I could have it instead of him. He needs to take it seriously all of the time and I am hoping this will come with age. Hopefully, technology will also improve and be more readily available and affordable. Fin likes to succeed, so hopefully he will just treat this as another challenge.

“I didn’t really understand diabetes to this level before Finley was diagnosed, and I would think most people have heard of it but may not really understand the toll it takes and how much impact it has. Unless it touches your life it is just another disease.

“My advice to other parents is, if you suspect your child has diabetes, or if you see any symptoms that don’t seem right to you – then insist on a doctor’s appointment. Don’t take ‘we will see you in a few days’ as an answer. Once diagnosed, take all the help offered. Get family involved right from the start! Teach them how to perform the checks, how to give an injection, and so on. They can support your child on their diabetes journey. Most of all, try not to panic - life does go back to normal, it is just a new type of normal.”

Finally, Finley told what it’s like to have diabetes:

“I think it’s terrible to have diabetes as I have so many injections in my tummy, bum and leg. Each one of these hurt. My long acting insulin hurts the most and leave marks on my legs. My finger lancet does not hurt as much which I use to check my blood sugars. I don’t think my diabetes stops me from doing anything but it makes things more difficult. I am worried about looking after myself when I am older but I am hoping they find a cure."

Thank you to Sarah and Finley for sharing their story with us. If you need help understanding or managing diabetes, Diabetes UK offers a wealth of support and information, as well as online forums where you can share your experiences with other people.

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