Lewis was diagnosed age four and initially used insulin pens but they were not helping to achieve good control. He started using an insulin pump when he was six years old. He now has good control and feels that since his diagnosis, he has got all the support and help he needs from his Mum and Dad we learn from each other’s mistakes and we sort of help each other. He describes it as team work’. The family feels that learning about diabetes management is an ongoing process. Lewis, his family and the diabetes specialists have worked together to help Lewis control his diabetes and provide a safe space where he can talk about feelings and emotions. Lewis wants to become a mentor and help others.
Lewis was diagnosed when he was four years old and he started using insulin pens and carb counting. His Mum and Dad taught him how to carb counting and showed him how to do the injections, but despite his parent’s best efforts and the school’s help it was difficult to stabilise his blood sugar levels. He struggled a bit with the short-acting insulin because it hurt. He also remembers that he felt uncomfortable injecting in front of other children. About eighteen months after diagnosis his care team decided to apply for funding for an insulin pump. He started to wear a continuous glucose monitor (CGM) and the data results supported the case for funding an insulin pump by showing that the insulin pen regimen he was on was not able to stabilise his blood sugar levels. So, two years after diagnosis Lewis went on insulin pump treatment.
Lewis and his parents were given training on how to use the insulin pump and although he found it a bit daunting at first he feels that it is a lot easier than having to do multiple injections a day. Lewis and his parents feel that overall, the insulin pump has simplified the management of his condition and provided better control, but added that there are still times when he goes high or low for no apparent reason and they have to figure out what’s going on. For Lewis and his parents, the key is to test the blood sugars regularly to avoid problems. Lewis has never had any serious issues with his pump and knows what do if problems arise, such as needing to change a blocked cannula. Lewis parents also feel well supported by the company that supplies the pump and know that if there are any problems they will replace the pump within 6 hours.
Lewis uses a CGM provided by his diabetes care team. His parents found out about a low cost DIY receiver. This device uploads the CGM results to mobile phones so Lewis can have a quick glance at his sugar levels and correct them accordingly. His parents are also able to access his CGM data on their own mobiles so, if needed, they are able to provide advice. They use the DIY receiver in combination with the official receiver. Over the years his parents have accumulated a lot of information and knowledge and they feel confident about using the DIY device and feel that the DIY version is more reliable and accurate than the official one.
Lewis parents explained that before he started using an insulin pump his school life was greatly affected by his condition as he used to be high or low’ a lot. He was often absent from lessons and missed sharing things with other children. Lewiss parents said that some of the teachers were fantastic’ and wanted to help but others were worried. Once Lewis started using an insulin pump teachers found their task easier.
Lewis feels that since his diagnosis, he has had all the support and help he needs from his Mum and Dad we learn from each other’s mistakes and we sort of help each other. He describes it as team work’. The family feels that learning about diabetes management is an ongoing process. Lewis is sensitive to the need of his siblings and knows that sometimes his sister feels a bit left out’ and his little brother worries about him. The family were given the opportunity to discuss these kinds of issues when they attended family sessions organised by the diabetes clinic.
Lewis attends an adolescent clinic and says that the consultant gives him the opportunity to attend part of the consultation without his parents and to talk about issues that he wouldn’t openly talk to Mum and Dad about. His parents support this idea and feel that the diabetes team is getting him ready for when he grows up and attends consultations on his own. Lewis, his family and the diabetes specialists have worked together to help Lewis control his diabetes and provide a safe space where he can talk about feelings and emotions. Lewis wants to become a mentor and help others.