Newly diagnosed with diabetes

As a carer what do I need to learn?

We will teach you:

• the basic information about diabetes and blood glucose levels
• how to measure your child’s blood glucose levels with a small meter
• how to give your child an insulin injection
• how different food affect blood glucose readings
• how to slowly get your child’s blood glucose levels under control. This may take time but it is better to do it slowly than bring them down too fast
• about low blood glucose, levels which are called hypos
• how to recognise a low blood glucose level, how to treat it and how to avoid too many of them.

Our diabetes nurses visit nurseries, schools, child minders and so on to make sure all carers of your child are aware of diabetes and are given some guidance on what to look out for or how they can help.

What will happen now and in the next few days?

All newly diagnosed children need to have a blood tests taken to assess the blood glucose levels and also to check whether or not they need an insulin drip. These tests also help us confirm what type of diabetes your child has.

Some children are unwell when they are first diagnosed and need to be admitted to hospital and have an insulin and fluid drip. The doctors on call will explain what is happening but in this situation children need to stay in hospital for a day or two, sometimes longer.

Most children can go home once they have been seen by a diabetes doctor and nurse and had the essential training. However occasionally there is no team member free to see you that day for example bank holidays, weekends and admission to the ward is necessary.

What happens in the next few weeks?

Our nurses and dietitian will keep in touch by phone or visits but you can contact us for advice at any time.

Children will be seen regularly in clinic, at first every couple of weeks, then once things have settled down, every 3 months. If there are problems children may be seen more often.

We encourage you to learn as much as you can about diabetes and educate you child. We try to keep you up to date with new developments but please ask us if you have read about something in a newspaper.

All new families are offered an appointment with Paul Manning, the diabetes psychologist to discuss how diabetes has affected their life and child. We appreciate that for every family, diabetes takes a bit of adjusting to. It may be a stressful and worrying time. Our psychologists can help you with this and it is a good chance for you to meet them. Many families see the psychologists at various times in their lives with diabetes.

What happens at clinic?

When is the clinic?

We hold clinics every Wednesday, and alternate Thursday, and Friday. Most of the clinics are at the Northern General Hospital, Children’s Outpatients 2 (near Herries Road entrance) and 2 per month are held in Orange outpatients at Sheffield Children’s Hospital. You can chose which site suits you best. The same team and care are provided in all clinics. Please make every effort to come and let us know in plenty of time if you cannot make it.

What should I bring?

We would like you to always bring all your blood glucose meters (including school meters) and diaries to clinic. The meter will be downloaded for you to look at together with the team.

What should I expect from clinic?

The clinics are busy and you will be seen at your allocated appointment time. When you arrive, your height and weight, and blood pressure will be measured.

Once you have had diabetes for a couple of months you will have a small blood test from a finger. This is for a test called the HbA1c test which gives us an idea of your average blood glucose levels in the previous 2 to 3 months. Our target is to help you get a result of  less than 48 mmol/mol as we know this will help keep you healthy in the future.

What happens long-term?

We keep an eye on general health and growth. Once your child is over 10 years of age we do a more formal “annual review”. This involves checking for other problems that can happen with diabetes.

The best way to avoid long term health problems is to keep blood glucose levels as near normal as possible.

We want to know about your lives generally, as many things affect diabetes such sport, activities, holidays, illness and so on. At times your diabetes may feel rather overwhelming and difficult to control and you may want to think about meeting our psychologist.

We want you to be able to ask about things you wish to discuss, do not be scared to do so. Do not hesitate to contact the team for help between clinic appointments.

We expect everyone to attend an annual education update which may be half day or evening sessions.

We hold an informal new families evening for families of children diagnosed within the previous 12 month period. We also plan various activities are also organised for older teenagers.

We are here to help so do please contact us if you have concerns about your child’s diabetes.

Timetable for learning about diabetes (It is very important that you attend these sessions)

Other things to consider

Sharps disposal

Your GP should accept full sharps bins provided that they have prescribed them. Some GP’s are limited to how many they can accept at one time so try not to stock pile them or they may be refused.

Vaccinations

The diabetes team would encourage you to have the usual childhood vaccinations as the Department of Health recommendations. This includes an annual flu vaccination.

Opticians

All children with diabetes should attend their local opticians 2 yearly for a routine eye test. In addition to this routine test, from the age of 12, children with diabetes should also be screened by the Sheffield Eye Screening Service on a yearly basis.

Dental

All children should attend regular appointments with their dentist.

ID bracelets

You can get your child an ID bracelet from websites such as Amazon and eBay and so on. You can also purchase from Boots chemists but may need to place an order for delivery later. These are not provided on prescription.

Disability Living Allowance

You may be eligible to claim Disability Living Allowance. Please contact and help line number on 0845 712 3456.

You can find out more information on how to claim here. You can download a claim pack here.

Message from the parents of a child who has had diabetes for a few years now

“In August 2011 our 8 year old daughter Katie was diagnosed with type 1 diabetes. Despite having our suspicions in the weeks prior to her diagnosis we were all still very shocked, saddened and to be honest completely overwhelmed by the thought that our little girl had been diagnosed with a long term health condition.

However, with the passage of time diabetes has simply become a normal part of all our everyday lives. The irrational fear of hypos and hypers, the sleepless nights, the thought of not knowing what food to give all became easier and in time we began to realise that Katie could still eat what other children eat and lead a normal life.

Obviously Diabetes does bring significant challenges but, with a positive approach, it can be well managed and extremely rewarding. We have found that it has made us all the stronger for it.

Children are incredible and far more resilient and adaptable than we give them credit for.  Children quickly learn to accept and adapt to the routine of blood testing and injecting and very much take it all in their stride.

In our experience Diabetes has brought new opportunities into Katie’s life, all of which have had a positive impact. One notable occasion was the weekend away at Edale run by the fabulous Sheffield Children’s Hospital diabetes team. The children get to have fun, share exciting experiences and forge new friendships with fellow type 1 diabetics. Katie had the most amazing time, made new friends, some of whom she still stays in touch with. Also, as parents we were not only delighted that she was given the opportunity to partake in such an exciting outdoor pursuits weekend, but do so in such a safe and caring environment. After all who else could better care for your child than the SCH diabetes team, although they all did look completely exhausted at the end of the weekend.

Since diagnosis, and the implementation of the testing, monitoring and injecting regime that diabetes requires, we have seen significant progressions in Katie’s development as well as a general improvement in her general health. We are convinced that with continued treatment and good control the future for Katie is very bright.

The best advice we can give you is try and be positive, support your child, don’t be afraid to make mistakes (as in the early days these will be many and often). It is also worth remembering that whilst diabetes is an imposition to be overcome, with good control and the wonderful support of the diabetes team, your child will soon start to feel a great deal better. This, for us, is the ultimate goal.”

From Hannah, Rob, Katie and Emily.