Children with diabetes: a treatment and training program
Bibliografische Information der Deutschen Bibliothek
Die Deutsche Bibliothek verzeichnet diese Publikation in der Deutschen Nationalbibliografie; detaillierte bibliografische Daten sind im Internet über <http://dnb.ddb.de> abrufbar.
ISBN 978-3-87409-664-5 (EPUB)
ISBN 978-3-87409-665-2 (MOBI)
Founded by: P. Hürter, H.-U. Jastram, B. Regling, M. Toeller, K. Lange, B. Weber, W. Burger, R. Haller (1985)
Responsible for the 5th edition:
Prof. Dr. rer. nat. Karin Lange (Psychologist, specialized in Diabetes): Medizinische Psychologie OE 5430, Medizinische Hochschule Hannover, Carl-Neuberg-Straße 1, 30625 Hannover.
Martina Lösch-Binder (Diabeteseducator DDG), Prof. Dr. med. Andreas Neu (Diabetologist DDG): Universität Tübingen, Klinik für Kinder- und Jugendmedizin, Hoppe-Seyler-Straße 1, 72076 Tübingen.
Sarah Biester (Diabeteseducator DDG), Kerstin Remus (Diabeteseducator DDG),
Dr. med. Wolfgang von Schütz (Diabetologist DDG): Kinder- und Jugendkrankenhaus auf der Bult Hannover, Diabeteszentrum, Janusz-Korczak-Allee 12, 30173 Hannover.
Editor: Arbeitsgemeinschaft für Pädiatrische Diabetologie e. V. (AGPD)
Illustrations: Steffi Krohmann, Köln
Cultural adaptation and English translation 1st English edition 2017: Katarzyna Zinken, Sheonagh Clark, Karin Lange + Leeds Beckett University, Headingley Campus, LS6 3QQ Leeds, UK
Acknowledgements: The authors thank Liz Webster, the course leader, and all the participants of the first Advanced Diabetes Educator Course at the Leeds Beckett University, UK for their comments on an earlier draft of the Ian-book.
Funding: The English translation and publication have been kindly supported by Roche Diabetes Care Deutschland GmbH.
1st English edition 2017, based on 5th German edition 2017 |
Chapter 1
What is diabetes actually?
Chapter 2
Food and drinks for children with diabetes
Chapter 3
How do I treat myself well with insulin?
Chapter 4
What do I need to do to keep my blood glucose from going too high or too low?
Chapter 5
How do I notice that my blood glucose is too high or too low?
Chapter 6
For children who already know about diabetes
Ian and then also Laura have helped German children with diabetes to become familiar with the situation for more than twenty years. An accompanying booklet for parents gives advice how to handle this new task for the adult family members and explains in easy terms the concept of age-appropriate diabetes education.
Age-appropriate education and training has become standard over the last three decades in treating children with diabetes. It is included in both national and international guidelines like the 2014 Consensus Guidelines of the International Society for Pediatric and Adolescent Diabetes (www.ISPAD.org).
Despite guidelines and consensus statements, there remains huge variation in diabetes outcomes across countries and even between treatment facilities within the same country. Patient education is one of the most important measures within the scope of diabetes therapy for enabling people with diabetes to conduct active self-management. „SWEET“ is an acronym derived from “Better control in Pediatric and Adolescent diabeteS : Working to CrEat CEnTers of Reference” and is based on a partnership of established national and European diabetes organizations (www.sweet-project.eu) led by ISPAD. With a vision of equal, high quality care for all children with diabetes, SWEET has the mission to harmonize care to optimize outcomes in children and adolescents. In light of the advances of modern diabetes therapy becoming more widely available it created a platform for exchanging best practices among leading pediatric diabetes units.
With the help of the Leonardo da Vinci Lifelong Learning Program of the European Union an EU wide diabetes educator course was developed and these German educational materials were identified as fulfilling the educational needs. The authors of this English translation and cultural adaptation have taken great care to make these materials appropriate for use outside Germany.
I am convinced that this edition of the “Diabetes in Children” education program will have a similar success like in Germany were it was certified by the German Federal Insurance Office for use in long-term treatment and is a part of the German Disease Management Program (DMP) for type 1 diabetes in pediatrics. Disease management is a system of coordinated health care interventions and communications for people with conditions in which patient self-care efforts are of significant importance.
I wish to thank all contributors, physicians, nurses, psychologists, educators, dietitians, social workers and other members of diabetes teams that have contributed to this program. I trust that those that are facilitating the understanding of this complex disease for families worldwide with a command of the English language may find it useful. The SWEET initiative is committed to support and continuously review and improve educational tools for pediatric diabetes, so please give us feedback for potential areas of improvement. With all my best personal wishes for the child with diabetes, its family, and all those concerned with their well-being, I remain on behalf of the SWEET project, yours sincerely
Prof. Thomas Danne
Pediatric Diabetologist,
Chairman SWEET project,
Former President ISPAD
Hannover, Germany, December 2017
I am 10 years old and in year 5. After school I like going out on my bike and meeting up with my friends.
Also, I like playing on my Wii, going swimming and playing football. My favourite subject at school is PE and I hate doing homework.
Oh yes and four years ago I got diabetes. I’ve learned plenty about it since then.
If you like I will tell you a bit about what’s important so you know what is happening and learn about your diabetes. I guess, I have a few tips for you.
Would you like to listen?
Then here we go!
I was almost seven. I can remember very clearly how thirsty I was. Even during the night, I got up to go to the kitchen to have a drink. I could have drunk a whole bottle of water at once.
The next thing I noticed was that I had to go to the toilet a lot. A few times I nearly left it too late! Once, I almost wet the bed.
My teacher at school was wondering what made me need to go to the toilet so often. I too was confused but could not help it.
At the very beginning the huge thirst and constant urge to go to the toilet helped me to recognise my diabetes. |
Shortly before my diabetes was diagnosed I felt very tired and sluggish even when I went to bed early. Playing with my friends wasn’t fun anymore. In PE I couldn’t keep up and had to rest a lot.
Did you have similar experience?
Even though that I ate and drank plenty I kept losing weight.
Eventually my dad asked me to check my weight on a scale. My parents were horrified. I had lost lots of weight and was only 2.5 stone. My mum was very worried. She wanted us to go to the GP the next morning.
At the beginning I was not only very thirsty and tired but also got very thin. |
The next morning, we went to see the doctor. She checked my urine and a nurse took my blood.
She looked very serious. She said something about diabetes, but I did not understand it then. However, I knew that something was not right as my mum went pale and her hands started to shake.
Although I did not want to, I cried a bit when the doctor called the paediatric unit at the hospital to get us in.
The doctor found too much sugar in my blood. I also had sugar and ketones in my urine. I had type 1 diabetes.
Mum called my dad and we went directly to the hospital. On the way there we collected some belongings from home for me.
The doctor found out that I have diabetes. That’s why she sent me to the hospital. |
Take a piece of paper to write or draw a picture of how it was for you when you got diabetes. Afterwards you can share it with your parents or your brother or sister.
At some point your body stopped producing insulin.
What is insulin?
The body produces insulin just as it produces blood. You do not notice it. You notice it first when insulin is missing. Then you feel unwell as I did when I was first diagnosed and went to the hospital.
This is at least how the nurse Anna explained it to me. Insulin is very important. Nobody can live without insulin.
Insulin is readily available, and you can inject it whenever you need it.
Once you inject your insulin, you feel better. You can play, eat; you do not have to drink that much and go to the toilet that often. You regain the weight you lost and grow as other children do.
You have diabetes because your insulin is missing. As you need insulin to survive, you inject it instead. |
Food is needed not only when you are hungry, it helps you grow and get stronger. However, food by itself does not make you thrive. Insulin plays an important part in making this happen.
Insulin and food together provide energy, so that you can play, go on a bike, swim, do anything you enjoy doing.
Without insulin your food won’t give you energy. You will be tired and sluggish again.
You need insulin, so your food can give you energy. |
After one week in hospital I asked Nurse Anna, how long will I have to take insulin. She looked at me as if she did not know what to say. Then, she said that I will have to inject insulin for the rest of my life, so that I can feel well and thrive. It made me scared. I was angry, sad and wanted to run away.
However, after a while, I convinced myself that I can do a good job of injecting insulin and it did not hurt that much. My mum told me then that there are illnesses which go away such as cold, measles or flu but there are other illnesses such as diabetes which stay forever. You cannot heal them but you can treat them effectively so that I can live a normal life as other children do. Also with diabetes I can play with my friends, go crazy, go to school and be cheeky.
You and I will always need insulin, so we feel well. |
While in the hospital I thought to myself: “Has diabetes happened to me because I did something wrong? I was always eating a lot of sweets and my mum would get cross with me.”
This thought worried me, so I talked to my doctor about it and he said “Ian, you have done nothing wrong, definitely not!”
Even if you had never eaten sweets, the diabetes would have come. Your body just stopped producing insulin at some point. It has nothing to do with what you have eaten or drank. It’s not your fault or your parents fault that you need insulin. This is true for all children with type 1 diabetes.
Diabetes just comes. Neither children nor parents had done anything wrong. Diabetes is also not because a child was naughty and fooled around. Nobody is to blame!
No one is to blame for having diabetes. |
In the meantime I got to know other children with diabetes. My parents and I went once to a diabetes event. I met some of my friends with diabetes there. The doctors and nurses explained diabetes to us and our parents. Afterwards we played and had a good time together.
I like the fact that I am not the only child with diabetes. At the event I met Charlotte, Laura, Jo and Rohan. They all have diabetes. We became good friends and have met up a lot since.