Type 1 diabetes in children: Sarah's story

Diabetes is often in the news these days as the number of people diagnosed increases to ‘epidemic’ proportions. Around 9 out of 10 of those new cases of diabetes will be type 2, but in 1 in 10 cases it will be type 1 diabetes that presents, often in general practice. As more and more nurses run ‘minor illness’ clinics it is vital that they remain vigilant to the possibility of type 1 diabetes in the acutely ill child

SARAH’S STORY

Sarah is 3 years old and lives with her parents and two older brothers, age 9 and 11, in an inner city area of England. Both parents work – her father is a fork lift truck driver and her mother is a beautician – and her two older brothers are at primary school. The family have always been interested keeping fit and healthy, and although the boys have games consoles and enjoy gaming like most children of this age, they are also very physically active and engage in a range of sport-related hobbies both at and after school. Generally, the children have enjoyed good health only suffering from the usual childhood illnesses and occasional coughs and colds. They are all fully vaccinated and have attended all of their childhood health checks where no problems were identified. However, there is a family history of auto-immune disease on mum’s side – she has had hyperthyroidism since her early 20s and her sister has been hypothyroid since her mid-20s. There is also a family history of pernicious anaemia. Autoimmune disorders appear to have a genetic component and type 1 diabetes is recognised as being an autoimmune disease.¹

When Sarah was 13 months old, she developed a rash, which mum thought might be the start of chicken pox as she had been in contact with a friend’s child with the condition. However, the rash disappeared within 12 hours and Sarah was left with symptoms of a ‘tummy bug’ with intermittent vomiting. Mum had also noticed that she seemed to be looking thinner, but as she had recently started to walk this was put down to her increased activity levels. On the following day, a Sunday, she was still poorly and seemed lethargic and ‘glazed’ so was seen by an out of hours GP who diagnosed gastro-enteritis and offered paracetamol and replacement fluids. The next day Sarah seemed to be getting weaker and mum noticed that she had very dilated pupils. She was still not eating although she was drinking a lot, so her parents took her to her usual surgery where she was seen in the practice nurse’s minor illness clinic.

The nurse took a history, checked her observations and carried out an initial assessment. During this assessment, Sarah’s mum was asked whether Sarah was still having wet nappies and mum explained that she was; in fact, she explained, Sarah’s nappies had been soaking wet for a few weeks now, so much so that she was leaking through them on most days so mum had changed the brand to see if this helped. This was, perhaps, a missed opportunity to check Sarah’s blood glucose as polyuria and polydipsia are classic symptoms of both types of diabetes,² and these features, along with the acute onset of her illness, could have aroused suspicions enough to check the blood glucose. The ‘4 Ts’ campaign, launched by Diabetes UK in 2012, reminded people of the key indications that should prompt consideration of a diagnosis of type 1 diabetes: toilet, thirsty, tired and thinner. This highlights the importance of not only taking a good history but also analysing what is said and thinking about what it might mean. The Juvenile Diabetes Research Foundation (2010) states that type 1 diabetes is seen most commonly between the ages of 10-14, but that it is the under 5s who have seen the biggest increase in incidence and prevalence in recent years.³ Sarah was asked to wait to be seen by the on call GP, and after 45 minutes she was seen. The GP was not sure what was happening with Sarah and decided to send her to the emergency department (ED) for further assessment and management. A blood glucose reading had still not been taken at this point. However, following triage by the nurse in the ED a finger prick test was immediately carried out, and Sarah’s blood glucose was recorded as being ‘HI’ which means it was in excess of 33mmol/l. Ketone testing revealed ketones well above the 3mmol/l level, which is recognised as being the ‘danger zone’ for ketones.

PATHOPHYSIOLOGY OF TYPE 1 DIABETES

Type 1 diabetes results in destruction of the beta cells in the pancreas that produce insulin, leading to a complete loss of insulin in the body and potentially life threatening hyperglycaemia. In comparison, type 2 diabetes is due to insulin resistance, related in most cases to central obesity and inactivity.^2,4 As blood glucose levels rise the body starts to develop osmotic symptoms – thirst and polyuria. The lack of insulin in type 1 diabetes means that energy from glucose cannot be moved into the cells so the body starts to break down fat supplies to use as energy instead. Weight loss may be seen as a result of this breakdown of fat. Ketones are a waste product of fat metabolism, and as ketones levels rise out of control the patient will be at risk of developing the potentially fatal condition diabetic ketoacidosis (DKA). Aside from death, possible side effects of DKA include hypovolaemic shock, cerebral oedema and acute renal failure. The Royal College of Paediatrics and Child Health reports that the incidence of children with diabetes being admitted with DKA has almost doubled since 2005.5 There was a diabetes consultant on site in the ED and on being informed of Sarah’s readings, immediate transfer was arranged to the high dependency unit for ongoing management; Sarah remained there for 4 days.

SUBSEQUENT MANAGEMENT

Following her diagnosis, Sarah was stabilised on insulin and was subsequently discharged on insulin injections four times a day – one long-acting background insulin given once daily and a fast-acting insulin to be given three times a day with meals. Sarah also needed blood glucose tests throughout the day to assess the level of control and dictate the insulin doses required. From a normal, healthy toddler, Sarah had suddenly become one who needed close and careful monitoring of blood tests, food intake and medication doses. She needed to be pricked with needles for insulin injections and tests sometimes a dozen times a day. In hospital, Sarah’s parents were taught how to count carbohydrates and adjust insulin doses down to decimal points to optimise her glycaemic control. They were also taught how to recognise and manage hypoglycaemia and hyperglycaemia. The input of the diabetes specialist nurse (DSN) team was invaluable and Sarah’s parents have nothing but praise for their DSN. However, their DSN service is not 24/7, 365 days a year and this has meant that sometimes Sarah’s parents have needed help from people other than the DSN. Although this will not be the case with everyone, in Sarah’s parents’ experience, clinicians in general practice have been woefully inadequate when it comes to managing type 1 diabetes and this has meant that they now bypass general practice when Sarah is unwell with anything that might affect her diabetes and go straight to the ED.

Sarah, like many toddlers, is prone to tonsillitis and ear infections; when this happens her sugar levels increase as do her ketone levels. In the past if she attended the surgery or the Walk-in Centre she was sent to the ED because of the presence of ketones, even though mum’s view was that treating the infection would address the root cause of the hyperglycaemia and ketonuria or ketonaemia. As this happened so often, Sarah’s parents now take her straight to the ED if she has an ear or throat infection. However, even the service provided in the ED has been variable at times although the presence of the specialist team nearby provides reassurance that help is on hand if needed and this is the most important factor for the family.

In general practice, Sarah’s mum has experienced problems with staff having limited knowledge of type 1 diabetes and not understanding the basics of insulin use, especially pump therapy; she has also been questioned about her high use of blood glucose testing strips. On one occasion Sarah’s insulin was incorrectly transcribed from her hospital discharge letter to the general practice records, which could have been potentially dangerous although fortunately Sarah’s mum recognised the error and notified the practice and the pharmacist. However, Sarah’s parents are very aware that primary care has a lot to deal with and that staff may not have much experience with type 1 diabetes, especially in such a young child.

EFFECT OF TYPE 1 DIABETES ON THE FAMILY

Sarah’s diagnosis has had a huge impact on the family. The parents have found that their relationship has been strained at times as they cope with sleepless nights when Sarah needs monitoring throughout the night. Sarah’s mum has had to go from working full time to working a few hours a week, which put strain on their finances although they receive disability living allowance for Sarah. Sarah’s siblings have had problems at school due to lateness when Sarah has been refusing to eat breakfast (in typical toddler fashion) or has needed to have her blood glucose levels stabilised before leaving the house. Calculating ‘carbs’ for a toddler who may or may not eat those carbs has proved a challenge and like any toddler, food battles have been known to occur! Previously, Sarah’s mum enquired about the Dose Adjustment for Normal Eating (DAFNE) course for Sarah but was told that it was ‘not offered locally’. Temper tantrums may be normal toddler behaviour or due to abnormal glucose levels and mum has become expert at recognising when each is to blame for any challenging behaviour. Whereas many parents might be delighted when their toddler sleeps in, it can be a cause for great anxiety for Sarah’s parents. Having a child with type 1 diabetes has also curtailed their own social life and alcohol intake as they need to be alert and able to drive at any time.

The boys have also had to give up some of their extracurricular activities as it became too much for the parents trying to juggle everything. Sarah’s father has found it harder to understand how to manage carbohydrates and insulin doses so the onus of care has been on mum. Neither parent feels able to leave Sarah overnight with any one as her control is still unpredictable even though she now has an insulin pump. Again, this affects the parents’ relationship. Sarah can be left for short periods with a family member but the parents say that they feel most comfortable about leaving her with an adult and one of her siblings – both of whom possibly know more about managing type 1 diabetes than most clinicians! This must place something of a burden on the boys although when asked, they both said that they feel more ‘responsible’ and more aware of healthy eating as a result of Sarah’s condition. However, they admit to worrying about their sister.

DEALING WITH AN EMERGENCY

The family have reason to be worried after a recent episode of severe hypoglycaemia required admission via a 999 call. Sarah had had her usual meal and insulin dose and had gone for a nap. A short time later she woke with a shriek and her brother ran in to see her. Sarah was very pale and started fitting and frothing at the mouth; she had a blood glucose of 1.1 mmol/l. Her parents had been told how to treat this situation: give glucagon by injection.⁶ However, they had only been shown a picture of the glucagon injection and had never seen the actual device or had the chance to practise giving it. Fortunately they were used to injecting Sarah with insulin so they managed, using the instruction leaflet in the pack. Paramedics arrived quickly and took over, and Sarah made a good recovery. However, known complications of severe hypoglycaemia include neurological and cardiac events. The whole family found the event very distressing and this has made them more likely to seek input from ED staff if Sarah is ever unwell. Both boys are now able to explain in impressive detail how to diagnose and treat both hyper- and hypoglycaemia. Interestingly, Sarah’s mum mentioned how several friends with children who have type 1 diabetes were told that glucagon needs to be kept in a fridge, so did not take it out with them. However, it can be kept at room temperature for up to 18 months and parents (and adults with type 1 diabetes) should not be deterred from carrying it with them because of concerns regarding refrigeration.⁷

FUTURE MANAGEMENT

After Sarah’s episode of severe hypoglycaemia, the decision was made to fit her with a continuous subcutaneous insulin infusion (CSII) pump, in line with NICE guidance.⁸ Approximately one in 20 children under the age of 18 has an insulin pump, a figure which is much lower than in other European countries.⁹ Since having her pump, Sarah’s control has improved dramatically and whereas the parents were taking her to the ED every few weeks pre-pump, they have only attended twice in the year since pump therapy was started. Although the number of injections has reduced as a result of pump therapy, cannula changes, which are carried out by mum every couple of days, are traumatic for all concerned, and Sarah refers to her cannula as her ‘ouch’. Sarah is now 3 years old and her parents feel that having quite literally experienced the highs and lows of managing type 1 diabetes they are better equipped for helping Sarah in the future but they feel that it has been a case of trial and error over the past couple of years to get to this point, and that care has always been reactive rather than proactive. They feel that diabetes care is far more structured for type 2 than it is for type 1 – and they may have a point. Sarah is old enough for preschool now but mum worries about her going, although the DSN service provides education for schools where a child has type 1 diabetes. Issues around blood glucose testing and administering medication often create problems for parents of children with type 1 diabetes who are at school and cannot administer their medication themselves.

WHAT SHOULD WE BE DOING IN PRIMARY CARE?

Sarah’s case is just one story, and many children with type 1 diabetes will have a far less traumatic tale to tell of their diagnosis and management. However, with the increasing number of children presenting with type 1 diabetes and DKA primary care needs to be vigilant. According to Diabetes UK’s report ‘State of the Nation 2013,’¹¹ the specialist care that children with type 1 diabetes require is not routinely in place in all areas and this puts these children at high risk of developing complications later on in life. The UK is currently one of the worst performing countries in Europe in terms of glycaemic control for children with diabetes with 84% of children being poorly controlled. Furthermore less than 6% of all children over the age of 12 have all of the key checks recommended: HbA1C; body mass index; blood pressure; urinary albumin; blood creatinine; cholesterol; retinal screening and a foot examination. Sarah’s parents have nothing but praise for the care and support offered by her DSN and consultant but also find online support via specialist websites such as that provided by the Juvenile Diabetes Research Foundation and social media networks invaluable. Arguably further input and support is needed for parents and patients with type 1 diabetes and, as more and more care is delivered in primary care, it could be argued that clinicians in general practice need to increase the level of service they offer as the first port of call, both in terms of recognising children at risk and being able to support parents and patients with type 1 diabetes throughout their journey.

REFERENCES

1. Holt T, Kumar S. ABC of Diabetes. Oxford: Wiley-Blackwell; 2010

2. NHS Choices (2012) Diabetes Type 1. Available at: http://www.nhs.uk/conditions/diabetes-type1/pages/introduction.aspx

3 Juvenile Diabetes Research Foundation.Type 1 diabetes fact sheet, 2010. Available at: http://www.jdrft1.org.uk/page.asp?section=255§ionTitle=

Type+1+Diabetes+Facts

4. NHS Choices. Diabetes type 2, 2012. Available at: http://www.nhs.uk/Conditions/Diabetes-type2/Pages/Symptoms.aspx

5. Royal College of Paediatrics and Child Health. Lack of diabetes awareness putting children at risk of dangerous complications. Press release, 2014. Available at: http://www.rcpch.ac.uk/news/lack-diabetes-awareness-putting-children-risk-dangerous-complications Accessed March 2014

6. Pearson T. Glucagon as a treatment of severe hypoglycemia: safe and efficacious but underutilized. Diabetes Educ 2008; 34(1):128-34.

7. Electronic Medicines compendium. Glucagel storage instructions, 2014. Available at: https://www.medicines.org.uk/emc/medicine/4258/SPC/GlucaGen+Hypokit+1+mg/#STORAGE Accessed March 2014

8. NICE Technology Appraisal 151 Continuous subcutaneous insulin infusion for the treatment of diabetes mellitus, 2008. Available at www.nice.org.uk/nicemedia/pdf/TA151Guidance.pdf Accessed March 2014

9. ABCD, Diabetes UK, JDRF. The UK Insulin Pump Audit – Service Level Data 2013. Available at http://www.diabetes.org.uk/Documents/News/The_United_Kingdom_Insulin_Pump_Audit_May_2013.pdf Accessed March 2014

10. Diabetes UK. State of the Nation 2013. Available at: http://www.diabetes.org.uk/Documents/About%20Us/What%20we%20say/0160b-state-nation-2013-england-1213.pdf