The alarm bell rang and Philip woke up, alert as usual. It was a cold rainy morning but that didn’t stop the young athlete to wake up to train. It was his 14th birthday in a week’s time and he knew he had to shed more sweat to fetch himself the birthday gift he so wanted – a gold medal at the inter-school 100 meters sprint. Strangely, he felt weak. He had noticed feeling excessively tired and thirsty since a few days but had kept it to himself. No matter how hard he pushed he felt he wasn’t at his best in the field. Saddened, he returned home.
He knew something was wrong and had to talk to someone about it. His best friend was his mother whom he admired a lot for her resilience. She was a single mother and did a great job in providing and being there for him, no matter how hard she had to work in the crammed desk at her office, 3 hours away. He told her how tired he gets when he wants to run and train. She felt disturbed as it seemed so unusual to her little boy who was known for his athletic skills. After breakfast, they went to see her family physician.
A battery of tests followed a series of questions. In an hour they were summoned to the doctor’s office. The doctor explained in a quiet tone why he had done those tests. Leaning forward and resting his chin over his wrinkled hands he said ‘Madam, your son has diabetes’.
Philip and his mother looked eye to eye. She couldn’t believe what she just heard. ‘Why did it have to happen to my son, she thought as tears rolled down her eyes’. She had heard quite a lot about diabetes and its ill-effects in the long term, on the health channel. After receiving the prescription which had multiple shots of insulin and the advice about diabetes self management which sounded like Greek and Latin to the mother overcome with grief, they returned home. She was especially worried when the doctor told her that her son’s sugars may go low and that can cause serious discomfort. How am I going to explain all this to him? How will I manage? How will my poor child cope with the multiple injections? Oh, his little fingers will have to be pricked so many times in a day? What if he gets the complications? How will he manage when at school? How will he manage when he goes to college? What will I tell my neighbors? Will everyone think my son is a ‘sick’ boy? Will he be able to eat anything that he likes? What will he do when I grow old and am no longer there to take care of him? Will he ever be able to run again? She thought… she wept.
As they sat by the table, Philip heard patiently to his mother. It was too much for him to understand.He spend most of the conversation feeling sorry for his mother and for himself. What did I do to get this, he thought? Will I be able to run again, he asked his mother? ‘You will, son’, she said in a confident tone. ‘You will’, she repeated as she held his hand.
Like Philip and his mother many children and their families with type 1 diabetes feel overwhelmed at the time of diagnosis. They feel weak to understand the amount of knowledge required to manage the condition. Grief, guilt and a host of other complex feelings come into play and can lead to a ‘quiet crisis’. Children may feel it to be some sort of a punishment while parents wonder why their precious child was affected and wonder what they could have done to prevent it.
It’s a delicate balance between too tight control provoking hypoglycemia and relaxed control which can lead to complications later in life. Multiple insulin injections, frequent self-monitoring of blood glucose, follow-up visits, dietary and life-style changes can prove to be too much for both the patient and the family alike. As a child whose preferences differ enormously from adults and whose choices continue to change with age which is predominantly the norm, frequent adaptations to treatment approach may be required.
What is indeed good diabetes management? Is it tight glycemic control with the right choice of medications –oral or injectable? Is it self management education advise ‘as per the protocol’? Is it sticking to an excellent carbohydrate-counting type of diet? Is it strict follow-up? Is it monitoring of complications and treating them early? Is it counseling the family also? Yes, the answer is right. All the above mentioned points constitutes a part of good diabetes management. But above all, good diabetes management not just reduces complications but also improves the quality of life for children and adolescents with diabetes and their parents. Extended family and school can also play a vital role in improving the management as well as the quality of life. The child and the important folks involved in his life should be educated and empowered to face the condition.
Philip was ready for his first insulin injection. His mother purchased the needle ‘that hurts him the least’. She got his new ‘sugar testing box’. The little boy explored the contents of the box with curiosity. The numbers on the face of the device reminded him of the timer device that his sports coach had. Both of them were seated on the couch. She was reminded of the days when he as a little boy would sit beside her and she would explain how the toy train ran. She held his little fingers and told him that it may sting a bit. Saying so, she pricked his finger with the lancet device. Ouuuuchhhh, Mom , Philip said. His blood was applied to the strip and then they waited. The result was entered in the log book and the mother gave him his first injection. ‘It isn’t painful,ma’, Philip said. She smiled at his courage. She embraced him running her fingers through his hair. Philip, ‘ this is a race too. And here we are competing with an unwelcome guest. We need to keep him slower and weaker than us for us to win. And to see if he is actually behind you we need to check your blood often. You also need to pay attention to what you eat so that you are healthier than him. You also need these injections to stay fitter’. So are we in, she quipped. ‘Yes, mom. I am in, he said with a grin’.
Education and making both the child and the family is an ongoing process. Psycho-social barriers need to be identified and corrected. Problem –solving skills need to be polished. These improve treatment outcomes. The learning strategies have to be flexible and need to be tailored according to the individual. Children with families who are more educated about the condition, naturally deal with it better.
The glycemic response to food, insulin and day to day activities vary greatly and it often becomes exceedingly frustrating for the child and his family to cope with it. It may quite often be perceived as a failure, when in reality is it not. The needs of a very young child, that of a slightly older child and a teenager are greatly different. Our body responds differently to growth, development and puberty and there can be wide variations even from person to person.
A very young child is more or less ‘dependent’ on the family for care whereas an older child can be offered more independence and responsibility to manage his condition in association with healthy family support. Self management and self-efficacy boosts self esteem and encourages a positive outlook towards life which is invaluable in a phase where character and personality is built.
Philip began coming to terms with his condition. He would listen to talks about diabetes on TV, read about it in hand-books and articles in the paper. He even got himself registered in a forum where children are affected like him. He spent the time he actually would on video-games on surfing the internet with his mother and learn more about diabetes. Reading about millions of children affected by the same disease as he has, in a strange way gave him self-confidence. His mother could relate to other mothers faced with the same situation. Together, they would try ‘healthy’ recopies, kick ball in the lawn, go swimming, have weekend outings where they would mostly spend time hiking and when they are terribly bored would simply cuddle in the couch reciting the ‘sick-day rules’. Suddenly, life no longer seemed hard. On the contrary it seemed exciting in a new way. It seemed more like a challenge. A fantastic race against an unwelcome guest where they were both determined to win. Philip’s condition changed the way they he dealt with his entire life. Together with his mother he took up the challenge by learning all he could about diabetes and how he could live a healthy life with the condition. He was also back in the field with his spiked shoes determined to stand on that podium and bite on the gold medal. He was back in the training field raring to go.
The treatment of diabetes should move from a physician-centric approach to a patient-centric approach whereby the patient is made to feel knowledgeable, active and powerful. The patient needs to become an expert in the conduct of his own life like the diabetologist who ought to become an expert in the management of diabetes. The child and the parent should be educated to acquire the knowledge of the clinical management of diabetes, develop behavior-changing skills, develop communication skills to communicate effectively with their health care providers and to assess if the self-care plan is realistic and sustainable.
Mismanagement at the time of adolescence is common. Fear, anger, depression and rebellion can be due to reduced satisfaction towards life and increased adolescent worries. And here you get to see players from the same team play against each other. Parents worry about poor diabetes control, complications, hypoglycemia whereas children seek more independence. The tussle can prove quite hard for the family, the child and the physician alike. Girls can have eating disorders at this time. Insulin treatment can be perceived as a social stigma. All this can contribute to psycho-social stress and that can in turn have a toll on diabetes control and follow-up. Peer support can prove invaluable here. The child should be reassured about family support and that follow-up at the diabetes clinic is worthwhile. At the follow-up visit, the child and the family need to be updated on how new issues like holidays, long distance travel, sports, hikes..etc are to be managed. The family must be allowed to talk freely and discuss about their fears and ideas. Newer management options and techniques can be explained by the health care team. In short, the visit to the doctor should be one such that the patient and the family feels empowered and strong. Guilt, if any should be constructively channelized into successful behavior change bringing about a positive outcome.
It was Philip’s birthday. All night he lay thinking about the finish line. After some persuasion, his mother had permitted him to run. Though slightly worried, she knew this task be it successful or not would do a great deal of benefit to her son’s psyche and to hers. After breakfast they were at school. Huge waivers welcomed the guests and children were found practicing on the field. The field was decorated in red, blue, yellow and green. It was a bright morning and Philip looked around. He could feel his mother’s arm around him. He felt so strong. There was nothing in his mind except the gold medal. Not the disease, not the complications, not the follow-up. He changed his shoes and proceeded to stretch. His mother watched him closely. ‘Go on, Mom. Go on and sit comfortably at the viewer’s gallery’ ,he said. She smiled and flagged him the thumbs-up sign. He returned the same with a wink. In a few minutes the first event of the day-the 100 metres sprint was called for. Philip jogged his way to the starting line. His Mom could no longer sit at the comfort of her chair. She was nervous. The runners took up their position. For a second Philip was reminded of the doctor, the blood test, the sugars, the insulin, the finger-prick, the sick-day rule, the complication and his unwelcome friend. Then everything went into a blur. There he thought, he was running two races. One, for his gold medal-his treasured birthday gift and secondly, to prove to himself that he was better than his unwelcome guest. He needed that. He so needed to realize that. On your marks the coach screamed and 6 runners took their positions….get set……go and in a flash went our little master zooming by his competitors. ‘Philip, Philip, Philip’ cheered his mother, with joy gleaming from her eyes. Sweat ran down his brow as Philip flexed his muscles and ran the lane with every ounce on energy from his body, from his soul. Nothing else mattered to him but winning and there he was just a few steps from victory. He ran towards the finish line and his chest carried with it the red ribbon that was placed there. ‘He won, he won, she cried out in joy’. ‘He is my son’, she exclaimed to the screaming crowd around her. Philip had his victory and the win he so wanted. He finally had the birthday gift he dreamt of. Nothing stopped him. Not even diabetes. Many competitors were upset with Philip’s fantastic win but he could see just one shameful face – that of the ‘unwelcome guest’. With renewed energy he ran up the stands to his mother. ‘I won, Mom. We won, he said. ‘Yes, son. I knew you could do it. I knew it from the start’, she said with happy tears in her eyes’. At the prize session, Philip stood on the podium with his head high. He held his biscuit of gold between his teeth and grinned at his mother who clapped and screamed out his name at the top of her voice. Philip proved himself that nothing had changed and nothing could stop the desire in him to achieve.
It’s just not just about medicines or follow-up. Real diabetes care is about making the patient and his loved ones feel strong and empowered. They need to feel equipped to face challenges and be able to adapt diabetes to their life and not the other way around. Good education, motivation and support are the corner stone of diabetes management. Siblings, peers, extended family and school should be a part of that management. A positive approach towards life with confidence towards self-management would help families and young people with diabetes to cope positively and effectively. There lies true success in treating. It’s more than numbers and values. It’s about people, lives and how they feel.
Dr. Praveen Jeyapathy
M.D(Rom), M.Sc (DDFS), PGDFM
International Medical Centre – Apollo Sugar Clinic