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Introduction and diagnosis
You have just been told your child has type 1 diabetes and we all understand that this is a particularly difficult time for you.
It is important to realise that no one is to blame when a child develops diabetes, and although it is a permanent condition, it is one that can be treated and managed. Insulin must be given at least several times a day to keep the diabetes under control.
With the proper management and treatment your child will very soon be back to good health and will be able to return to school and all their usual activities.
How will we manage?
We aim to support you through these difficult early days, both in hospital and once you are at home, and we will give you continuing support to manage your child’s diabetes. We will teach you how to keep your child’s blood glucose levels as normal as possible, allowing them to enjoy life to the full and to grow in a healthy way through childhood and adolescence. This will be a good preparation for your child in managing their diabetes as adults.
In these early stages it seems that there is much to learn – try not to let it overwhelm you. There is plenty of time and there are lots of people to help you and your family.
What happens at diagnosis?
Children are usually admitted to the children’s ward in hospital. The length of stay in hospital will be kept as short as possible. You will be introduced to the Diabetes Team who will teach you about diabetes, help you to care for your child and discuss how long the stay in hospital would be.
It is very important that you let your child know that having diabetes has not made them a different person, they will still be able to do all the same things at school and with their friends.
What is diabetes?
Diabetes is a condition caused by the lack of a hormone called INSULIN in the body. Insulin is produced by a large gland called the pancreas which lies between the stomach and the backbone.
The pancreas produces insulin and diabetes occurs when the pancreas stops making insulin. When food is digested the carbohydrate element is converted to glucose and enters the blood stream. Insulin helps to move the glucose out of the blood and into the cells where it is used to produce the energy the body needs to function properly. This process will keep the blood glucose level between 4-7mmol/l (amount of glucose in a litre of blood).
When someone has diabetes, there is not enough insulin about to let the glucose out of the bloodstream, so the levels get higher and higher. The body will try to remove the high level of glucose through the passing of urine. This leads to thirst and is why you may have noticed that your child has been drinking a lot and going to the toilet more frequently.
When the body’s cells don’t have enough energy the body starts to make other substances called KETONES for fuel, by breaking down fat. When ketone levels are high they become poisonous to the body and cause nausea and vomiting.
Without insulin the body will have been short of energy and will have had too much glucose in the blood, making you feel tired.
With insulin treatment, all these problems will quickly settle down and your child will begin to feel much better. The rest of the pancreas, which produces intestinal juices, is working perfectly normally.
What causes diabetes?
No one really knows what causes diabetes. We do know that some people are at more risk because of the “genes” that they are born with.
We know that something triggers the immune system to start destroying the insulin and producing cells in the pancreas. This is called auto-immunity. This process may have been going on for several months, even years, without any symptoms. We do not know yet what the triggers may be.
No one can catch diabetes from you nor is it caused by eating too many sweets!
The symptoms of type 1 diabetes include: passing large amounts of urine, excessive thirst, tiredness and possibly some weight loss.
The good news is that although diabetes and insulin is for life, research is going on and it is hoped that there will be an alternative to injections at some time in the future. If your child keeps good blood glucose levels and looks after themselves during teenage years and adulthood, there is no reason why they should not lead a normal healthy life doing what everyone else can do.
Diabetes cannot yet be cured, but it can be controlled by giving insulin by injection to allow the body to run normally again. If your child receives their insulin they will feel well and will grow and mature normally. Your child will have insulin injections every day, and you will be taught how to give these. Unfortunately insulin cannot be taken as tablets because it is destroyed in the gut before it had a chance to enter the bloodstream.
As your child’s body is not making insulin we will teach your child / you how to give insulin. You will learn how easy injections can be!
Treatment will start immediately and will involve:
Lantus / Levemir / Degludec
This is the basal insulin.
This will provide the background insulin over a 24 hour period. It is given once a day (usually in the evening) at a time convenient to your child depending on their bedtime / evening activities. It is recommended that it is then given at the same time each evening.
This is the bolus insulin that is to be given at meal times. It is a rapid acting insulin given immediately before the meal. There may be occasions when it would be more appropriate to give this insulin straight after a meal but the Paediatric Diabetes Specialist Nurse will discuss this with you. NovoRapid begins working within 20 minutes of the injection and lasts 2-3 hours after.
Once your child is feeling better, the whole family can start to learn:
It will not be possible for you to master the whole of diabetes in a few days, but always ask if there is something that you don’t understand.
There are some things which you need to know soon but others which can be learned gradually once your child is home.
Your GP will be informed of the diagnosis before you leave the hospital. You will be given all the equipment you require on leaving the ward and we will arrange for your GP to prescribe further supplies.
Food and diabetes
The paediatric dietician will see you and your child as soon as possible after diagnosis and will arrange further reviews with you.
On admission: your child may have very little appetite until treatment with insulin has been begun and they start to feel better.
Once your child is able to start eating again the following guidelines will apply:
As treatment with insulin starts to make them feel better, your child’s appetite will be larger than normal. This is what we would expect to happen and you should allow your child to eat to their appetite.
All drinks must be sugar free and can include water, fruit squashes such as Robinsons Special R Reduced Sugar Squash or diet fizzy drinks, e.g. Diet Coke, diet lemonade. Fresh fruit juice must not be taken as it has a high sugar content. Milk should be taken with meals or snacks but not in-between.
A question about food often asked at diagnosis is:
Can my child still eat sweet foods, particularly chocolate? Sweet foods including chocolate are not banned from the diet of children with diabetes, and the dietician will discuss this in detail with you when she gives you all other dietary advice. However, it is best to avoid them at the beginning to give the blood glucose levels a better chance of returning to normal as quickly as possible.
Paediatric Diabetes Specialist Nurses on 01908 996522, or Ward 4 on 01908 996367 ([email protected])
The Paediatric Diabetes Specialist Nurse will visit you on the ward, and for the first few days at home close contact will be kept. She will visit you several times over the initial diagnosis period and we would urge that regular contact is maintained. A school / nursery education package will be offered.
The Paediatric Diabetes Specialist Nurse will be responsible for coordinating the care of your child in hospital, when you go home and in the clinic. She will be involved in the ongoing education of your family and your child regarding the management of your child’s diabetes.
Some issues that may be of concern to you will be discussed at a later date following a structured education programme e.g. times of illness, low and high blood glucose levels, holidays, exercise, parties and school trips.
We will keep in close contact with you over the next few months, both at home and in the clinic.
Children will often be able to take on some aspects of their own diabetes care depending on their age and maturity, however, even children and teenagers who are proficient in some practical aspects of diabetes need the continuing help and support of their parents.
Children’s and young people’s diabetes outpatient clinic
Regular clinic visits are essential to ensure your child’s continuing good health. The diabetes team includes: paediatric consultants, paediatric diabetes specialist nurses, paediatric dietician, psychologist and the clinic nurses. Together they are responsible for helping you to learn to manage the many different aspects of your child’s condition. The diabetes team meets after every clinic to exchange information, and to keep all members well informed. It is important for your child to see the various team members.
We look forward to seeing you in clinic. Please tell us exactly how things have been and not what you think you ought to say. We can be of more help that way!
The outpatient department, Luing Cowley, Milton Keynes University Hospital
What to bring?
Bring blood glucose diary / record book and blood glucose meter to every clinic visit please
Write down any questions you have so you remember to ask them at your visit.
Other people you may see at clinic:
The dietician and psychologist are core members of the diabetes team. You will be offered the opportunity to meet with them.
Student doctors and nurses sometimes attend clinic to learn about diabetes. You may be asked if one can accompany you or sit in the clinic room, but you may refuse if you wish.
By the end of the first year we hope that you and your child feel confident in coping with:
We will discuss these and other aspects of diabetes with you as they occur or become relevant.
In addition, we hope that you will have an understanding of the philosophy of diabetes care, and why we are interested in your blood glucose and HbA1c results.
Remember, keeping a diary of home blood glucose results is to help YOU / YOUR CHILD to look after THEIR diabetes. Do please bring the blood glucose monitoring diary and blood glucose meter to every visit.
Related to diabetes:
Most minor illnesses can be managed at home, however, if your child is unwell please contact PDSNs or use your red box access.
Blood glucose – the level or concentration of glucose in the blood
Carbohydrate – one of the tree main energy giving nutrients in foods, composed mainly of sugars and starches
Glucagen Kit – a box containing a syringe of fluid and a vial of glucagon powder to be injected to correct a severe hypo
Glucagon – a chemical messenger which increases glucose levels in the blood
Glucose – a sugar which is the chief source of energy for the body
Glycosuria – the presence of glucose in the urine
Glycosylated – see HbA1c
Haemoglobin HbA1c – a blood test that measures how much glucose is attached to the red blood cells. It gives a measure of the average blood glucose level during the previous 6-12 weeks.
Honeymoon period – the length of time during which the pancreas of someone who has recently been diagnosed with type 1 diabetes continues to make some insulin
Hormone – a chemical substance produced in one of the glands in the body and carried by the blood to have a specific effect on the functioning of other cells in the body
Hyperglycaemia – high blood glucose level
Hypoglycaemia – too low a level of blood glucose (or hypo)
Hypothyroidism – a low level of thyroid hormone in the blood
Insulin – a hormone produced by the beta cells of the pancreas which lowers the blood glucose by enabling transport of glucose from the blood into the body cells. This allows the cells to use glucose for energy.
Ketoacidosis – a serious condition caused by a deficiency of insulin which results in body fat being used for energy and producing ketones (which can be detected in the blood and urine) and acids as by-products
Ketones – fat is broken down to fatty acids when the body cells are “starving” due to the lack of glucose. The fatty acids are transformed into ketones by the liver, and the ketones then appear in the blood and urine. This can occur when there is a lack of insulin (with high blood glucose) or when there is a lack of food (with low blood glucose)
Pancreas – a gland situated near the stomach which produces digestive enzymes, insulin and other hormones
Subcutaneous – under the skin