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.
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.