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Insulin
Dependent
Diabetes
Trust
 

1. Introduction

2. Diagnosis

3. Climbing that Mountain

4. Life at School with a chronic condition

5. Testing and injecting at school – all options need to be considered

6. Information for teachers and for parents

7. Research of practical help

8. Family Relationships

9. Teenagers living with Diabetes - Dr Clare Williams, Institute of Education, University of London

10. Growing up with Diabetes

11. Discovering Alcohol

12. Eating Disorders

13. Hypoglycaemia in Children

14. New Teenage Website

15. Diabetes and Coeliac Disease

Introduction

Parents of children and teenagers who have diabetes are very special sorts of carers. They are suddenly faced with the diagnosis of their child and at the same time, the loss of their healthy child. They are bombarded with information about insulin, diet, blood tests, blood glucose control, hyper and hypoglycaemia and the future health of their child. It is a difficult time for the whole family and there are many worries, fears and concerns. We hope that this section will help to provide information, help and support. Knowing that you are not alone with the experiences of living with diabetes in your child can be of help and a comfort.

One message that we all need to remember is:

Whatever the cause of your child’s diabetes and however you may feel, it is not your fault that it has happened and there is nothing you could have done to prevent it. 

Diagnosis

The role of parents and their involvement in day to day living with diabetes is very different according to the age of their child when diagnosed. If your child is diagnosed when young, then clearly, as a parent, you are taking full responsibility for your child’s diabetes everyday and for 24 hours a day. If your child is a teenager when diagnosed then very often the teenager takes immediate responsibility for injections, blood testing, diet etc and the parents role is one of watching over with less direct involvement. This may sound easier but in many ways it isn’t, especially if your involvement in the diabetes clinic educational programme has been minimal.

However, whatever the age of your child when diabetes is diagnosed, it is a difficult and often traumatic time and most parents go through similar feelings. We care deeply for our children and it would not be natural if we did not go through a period of grief. These feelings are:

Shock – that this can happen to our child

Denial – ‘This can’t be happening to my child’. ‘I’ll wake up in the morning and it will have been a bad dream.’

Anger – ‘Why my child?’ ‘Why not someone else’s child?’

Sadness and grief – a sense of loss for the healthy child you had and for the expectations you had for your once healthy child.

Guilt – ‘Is it something that I have done?’ ‘Could I have prevented it?’ Guilt is not a rational feeling because it is certainly not anyone’s fault when a child has diabetes. But Mums especially seem to feel guilt when their child is diagnosed and probably for a long time afterwards. But there is a very important message for ALL parents: Whatever you may feel or think and whatever the cause of diabetes, it is NEVER YOUR fault that your child has diabetes and there is nothing that you could have done to prevent it.

The need to know – many parents go through the stage of wanting to know why their child has diabetes and where it came from. This seems to be part of the process, a need to blame someone or something, perhaps this helps to ease the burden of ‘guilt’.

Responsibility – it seems that the whole future health of your child rests on your shoulders and this is a huge weight to carry around.

A Personal Experience of Diagnosis

My daughter was diagnosed soon after her fifth birthday, one Friday evening, a Friday evening that I shall never forget! She was admitted to hospital - this was the first time either of my children had been away from me, so that alone was difficult. During her Wstay we were given masses of information about diabetes by innumerable different people – hypers, hypos, diet, exercise and shown how to inject. No one seemed to understand that I could not take all this in, the shock of diagnosis and accepting this was all my mind could deal with. So when we left hospital, along with all the other feelings of shock and grief, I felt alone, frightened and very ignorant about diabetes.

We were also given some of the hard facts of diabetes:

• It was here forever and my little girl would have insulin injections for the rest of her life.

• We needed to keep ‘good control’ of her diabetes to avoid the complications in later life.

• it was a simple matter of injecting the right amount of insulin to balance with the food – I learnt that this was rubbish, there is nothing simple about achieving ‘good’ control!

• she could live a perfectly normal life with diabetes.

I think that these last two statements were most confusing and unrealistic. They also had a long lasting and damaging effect. No doubt they were said to cheer me up! But actually they had just the opposite effect.

Initially diabetes seemed to take over our whole lives – injections, tests, snacks, meals. It was just like having a new baby in the house. On top of all these practical things there was still the worry of my daughter’s reaction to her diabetes; how she would cope; my son’s reactions to the changes and would he feel left out and finally the turmoil of my own emotions.

I waited for the normal life I had been promised to appear. It didn’t seem to arrive and I felt that this was my fault – I must be doing something wrong and I felt as if it was my inability to manage that was preventing us from having this ‘normal life’ the doctor had promised. I felt a failure. That one statement led me to expect that life would go back to how it had been before diabetes – normal. Had this not been said to me, my expectations would have been different and I would not have felt such a failure nor so much guilt for not achieving this ‘normal’ life we had been promised. 

Life has been normal now for many years – diabetes just became part of our lives, a part that does affect the whole family and a part that cannot be ignored. We all have feelings about diabetes, especially the child with it. We found that it was important to talk about these feelings within the family or within a support group because this way they seem normal and are normal when living with diabetes. Once I realised that our experiences were similar to those of many other people in the same position, that I was not the only one who could not always achieve the standards set by the clinic and that I was not a failure, life became much better for us all. 

Looking back now over the 28 years that my daughter has had diabetes I know that some of my feelings that I had at diagnosis are still there – the guilt and the sadness. They only really loom if there are problems, which do occur from time to time, but I also now know that I have always done my personal best. This ‘best’ may not seem as good as someone else’s best but it was my best and none of us can be expected to anymore than our best.

A quote from my daughter when she was 25 and had diabetes for 20 years. "Nobody wants diabetes but if I had to have it, I’m glad I got it when I was young and can’t remember life without it. Being diabetic is just part of me and not something that suddenly hit me. I didn’t have to get used to any great changes in my life or adjustments in my lifestyle or self image."

Diagnosis - hospitalisation or home?

If your child suddenly becomes very ill and this is an emergency then hospitalisation at the time of diagnosis has to take place. If you notice over a matter of weeks or days that your child is unwell, going thin and drinking a lot, you usually see your GP who then diagnoses diabetes. Whether hospitalisation takes place in this case very often is dependent on the local policy. Diagnosis and treatment maybe started at home without a hospital stay or it maybe that a couple of days are spent in hospital. In the past children used to always stay in hospital for at least a week at diagnosis.

There are advantages and disadvantages to both policies.

• Going into hospital can be quite traumatic for your child even though visiting in children's wards has few restrictions nowadays and parents staying overnight is often available. It also means that your child will be away from school longer.

• It has the advantage of giving you, the parents, time to adjust to the diagnosis, time to be sad and angry etc, away from your child. It gives you time have a break where you do not have to keep up the ‘brave face’ all the time for your child.

• A hospital in stay also has the advantage of making everyone concerned realise that diabetes is a serious condition that needs care and attention and cannot be treated lightly – this includes the parents, other family members, friends and teachers. Diagnosis at home and back to school in a couple of days has the disadvantage of reducing the importance and effects of diabetes, especially in the eyes of outsiders such as teachers. It may seem to them like any other minor illness for which a child is absent for a few days. This could affect how your child is treated in the future by the school, friends and family. It could also affect how you are treated – you could be seen as a fussing parent if people underestimate the significance of diabetes. [The neurotic mother syndrome that many of us know so well!]

• Diagnosis at home means that life is less disrupted for everyone and diabetes does not seem at this stage to be such a huge infringement on normal life. It also enables you to have the help, advice and support in your own home where you feel more comfortable and are less intimidated by all the white coats of hospital.  

Whatever the circumstances this is not an easy time for anyone and it is important that the seriousness and subsequent changes in lifestyle that diabetes brings, are not underestimated or influenced by whether or not your child is hospitalised at diagnosis 

Diabetes - Beware of climbing that mountain!

All too often we read about children, teenagers and adults with diabetes climbing mountains, sailing the seas and doing all sorts of fantastic things. I’m sure these articles are written with the best of intentions – to make us all feel better and let us know that our children can do anything, even with diabetes. Well they probably can, providing they take all the necessary precautions.

Does this actually make us feel better? Do they, in fact, make us feel worse, more inadequate and perhaps even a bit of a failure because we, or our children, don’t achieve these things?

They shouldn’t because the vast majority of people with or without diabetes don’t want to climb a mountain or sail across the Atlantic - they simply want to lead a normal everyday life just like their friends. This is just as great an achievement as climbing a mountain! Your child with diabetes attending its first party on its own, your teenager going to its first disco without going hypo or having blood sugars out of the roof – these are achievements that are just as important as climbing any mountain. These are the things that enable our children with diabetes to be like their friends and this is something that matters greatly to them, especially as they get into the teenage years. We can be justifiably proud of them for this. 

Are we over enthusiastic about their achievements?

I think that sometimes we, as parents, are in danger of this. Quite naturally we want our children with diabetes to achieve their full potential and we don’t want diabetes to interfere with their schoolwork or their hobbies. But we have to be very wary of falling into the trap of encouraging our children to do things just to prove that they can do them and to prove they are just as good, if not better, than their non-diabetic friends. We also have to be wary of our own desires to prove that our children can achieve even though they have diabetes.

We have to ask ourselves about the people in the articles – did they climb the mountain because they wanted to or did they do it to prove that they could as someone with diabetes? Would they have wanted to climb the mountain if they had not had diabetes? Are they going to go through life trying to prove that diabetes does not interfere with their lives? If the answer to this last question is yes, then I think this is sad and I do not believe that any of us, as parents, want that for our children. If they want to climb mountains because that is their hobby, then that’s fine. 

The balancing act

Just like the rest of living with diabetes, getting this aspect right is a balancing act. We do not want to pressurise our children with diabetes into being high achievers but at the same time we do not want to ‘spoil’ them simply because they have diabetes. Finding this balance is not easy – it is probably just as difficult as getting good blood glucose results!

One thing that most of us discover fairly early after diagnosis is that the world does not make allowances for someone with diabetes, whether a child, teenager or an adult and having this in mind when bringing up a child with diabetes, helps to find a balance. The one thing we all want for our children is that they are able to cope in the adult world, they grow up to be independent, healthy and above all, happy.  

The role model

Having said all of this there is a place for role models and Gary Mabbutt who was captain of Spurs and the first person with diabetes to play football for England, is a good example. ‘If Gary Mabbutt can play football for England, then diabetes doesn’t have to stop me doing anything.’

Gary and his family were in a TV programme about his life and his diabetes kept cropping up. His parents were justifiably proud of him. Without in any way detract from Gary’s success, the programme showed that he came from a footballing family and he was well on the way to a football career when he was diagnosed with diabetes in his teens. Gary’s real achievement was that he did not let diabetes interfere with his ambitions to be a professional footballer. This is the role model that children with diabetes need. He was not trying to prove that he could be a footballer and have diabetes – he was not letting diabetes stop him from doing what he wanted to do. There is a subtle difference. His parents were rightly very proud of him and we can be equally proud of our children when they do what they want to do, while at the same time managing their diabetes.

Life at school with a chronic physical condition

The NHS Research and development Programme funded a two-year study to investigate the support needs of young people with special health needs attending mainstream schools. They consulted young people, their parents and teachers. I don't know whether young people with diabetes are classed as having a 'chronic physical condition' but the results of the study certainly apply to them. It showed that:

• Young people were making active efforts to manage their own condition in school.

• They felt they needed support from health and education professionals in dealing with absence from school, including keeping up with school work.

• They also felt they needed support for joining in school activities, relationships with other pupils and having someone to talk to about health-related worries.

• Young people and parents said that support from teachers was variable, depending on the teacher's awareness and understanding of the child's condition.

• Teachers felt their need for health information was largely unmet and they did not want to rely solely on parents or school doctors for advice and information.

• Teachers urged the child's health professional to make contact on a regular basis.

• All participants in the study expressed concern about systems in the education services for passing information between and within schools.  

All these issues can apply to children and young people with diabetes. I am not sure if things have got any better since my daughter was in education, but a parent, who is also a teacher, recently sent me a copy of their school's guidelines for children with diabetes and procedures within the school for handling any difficulties. They horrified me - I think they must have been written soon after Banting and Best discovered insulin! I think the teachers have probably hit the nail in the head when they say that they would like direct and regular contact with the child's healthcare professional.

But one has to ask just how realistic this is in terms of time, effort and cost. I am sure that the effort would be worthwhile, especially, for instance, during the teenage years when both parents and the young people themselves are going through a difficult time. There may be behavioural problems related to having to conform to the diabetes regime and when parent / child communications may be difficult. The time has to be given by teachers as well as health professionals, and having had experiences of trying to organise meetings for teachers about diabetes in children, I have to say that these were often poorly attended because they were in after school time.  

If this problem for children with chronic conditions is going to be tackled, then there has to be real commitment on the part of everyone concerned. It has always seemed to me that the organisations representing children and young people with the various conditions should get together and work with the education system to find a way to answer the needs of the children and young people, the parents and the teachers. It is not simply a matter of producing information sheets that never get read or passed on to the relevant teachers.

Testing and injecting at school – all options need to be considered

One of the most frequently raised issues by parents with IDDT is the difficulties they are experiencing at school with injecting and blood glucose testing, especially for young primary school children. Lunchtime injecting and testing has become much more of a problem as a result of the introduction of insulin analogues, as the rapid-acting insulin has only has a short duration of action and doesn’t last long enough to cover lunch. 

This is a thorny problem and as with any other problem, there are two sides to the story. Let me be clear – I am not taking sides but trying to look at both sides of the coin and undoubtedly, the school system should provide for children with diabetes at school. It should not entail long verbal battles between parents and teachers. There are fairly stringent regulations about what teachers can and can’t do with children – the typical stories being that they are not even allowed to put a plaster on a cut and most certainly not allowed to hug a child in need of consolation. So asking them to do blood test and inject a young child, does seem to be outside their remit. At the same time, if young children are on a regime that requires a lunchtime test and at least one blood glucose test during the school day, what are parents supposed to do?

A new website  www.medicalconditionsatschool.org.uk due to be launched in October is still not available but as Diabetes UK was involved in this development, hopefully, it will provide clear guidance for both teachers and parents, so keep checking for the site to become live. Further searches which apply to children with diabetes at school found little useful information.  

IDDT recently had conversations with several parents:

Parent 1: has a son whose last two HbA1cs were 6.4 and 6.2 on twice daily injections – really good, yet the hospital want him to change insulins and go on to 4 injections a day. He doesn’t want to and his mum does not want to upset him when he is achieving good results without injections at school. So she’s putting her son’s wishes first and he is not changing to 4 injections a day.

Parent 2: her 5 year old daughter was on 4 injections a day before starting school and now she has started, the school is refusing to take responsibility for doing the lunchtime injections and blood tests. There is an ongoing letter-writing battle………

Parent 3: her 9 year old daughter is using insulin analogues and a pump. She has chosen this option for her daughter because she believes that it will provide better control and will be less likely to cause future complications.

Parent 4: has a son who is really unhappy about injecting at school on his 4 injections a day regime and after looking on the internet, she found that there are alternatives eg twice daily injections. She is quite angry that this choice has never been offered to her or her son.

Four different experiences and views but they all raise one question – have the parents and the children been given an informed choice of all treatment options? In considering the options we need to ask some pretty pertinent questions:

·                      Does injecting and testing at lunchtime, make your child feel different from the rest of the class? Is this causing your child extra stress [which can raise blood sugars]?

·                      Which is the best regime for your child and is there evidence that it produces the best HbA1c results?

·                      Is ‘going into battle’ with the school going to solve the problem and could it hinder your child’s overall needs? Will it single your child out with the teachers as being ‘different’ and is this what you want?

·                      What will give your child the best quality of life?

Confessions of an old parent!

My daughter was diagnosed at the age of 5, 32 years ago and the advice from our paediatrician was to make life as normal as possible for her so that she didn’t feel different from the rest of the class. Her diabetes control was as vital to us then as it is to parents now but her paediatrician encouraged us to look at aspects of her overall needs as a little person, as well as a little girl with diabetes. So fitting in at school and not making a big issue about her diabetes influenced the choices we made and as she got older, she was involved in those choices. My daughter went through her school career without having to inject at lunchtime. Occasionally she went low before lunch or before her morning snack but then children on multiple injections can do this as well!

How did we achieve this? By using short and intermediate-acting insulin before breakfast and before the evening meal. We did not use premix insulin so that we could adjust the short-acting insulin independently of the intermediate acting insulin. Short-acting insulin before breakfast lasts longer than rapid-acting analogue and took her over lunchtime when the longer-acting insulin kicked in and took her through to her evening meal. She then had another mixture of short and intermediate-acting insulin to cover her through the night. Interestingly, she keeps her carbohydrates down and still only needs the occasional lunchtime injection of short-acting insulin if she has a high carb lunch.

So lunchtime injections can be avoided with free-mix as we did or with premix insulins. But don’t take my word, look at the available evidence so that your choices are informed ones.

The evidence…………

The study [DCCT, 1990s] showed intensified insulin regimes [4 injections a day] improve control [also increase the risk of hypos], but only in adults with Type 1 diabetes, not children, so it should not be assumed that this also applies to children. But there are now two recently published studies that provide evidence to help:

First study: Intensive therapy and pump therapy over 10 years has not improved HbA1cs but has increased insulin dose

Prevailing therapeutic regimes and predictive factors for prandial insulin substitution in 26 687 children and adolescents with Type 1 diabetes in Germany and Austria. Diabetic Medicine, October 2007

The researchers classified the information about 26,687 children, treated from 1995 to 2005 in 152 paediatric clinics. Their average age was 13.6 years and average duration of diabetes 5.4 years. 73% were treated with 4 or more daily injections [intensive therapy], 14% with continuous subcutaneous insulin infusion [CSII] and 13% with 1-3 injections per day [conventional therapy].

The researchers concluded that:

·                      87% of the children were treated with intensive or pump therapy but while this percentage increased over the period of the study, the average HbA1c [approx 8.0%] was almost constant – in other words, it did not improve.

·                      Those using insulin analogues received up to 11% higher insulin doses per day compared with those treated with human insulin.

Second study: Twice-daily free mix insulin regimes gave the best HbA1cs

Continuing stability of centre differences in pediatric diabetes care: do advances in diabetes treatment improve outcome? Diabetes Care, Vol 30, number 9, September 2007

This international study in 21 paediatric diabetes centres investigated the influence of changes in insulin regimes, and other factors, on HbA1cs, hypoglycaemia and ketoacidosis. The 2,269 participants were aged between 11-18 and had diabetes at least a year. Fourteen of the centres had participated in previous studies so allowing a direct comparison of glycaemic control between 1998 and 2005.

The average HbA1c result for the whole group was 8.2 with girls having higher results than boys [8.3 vs 8.1] and those who had a longer duration of diabetes had modestly higher HbA1cs. 85.3% of the children/adolescents were on one of 5 insulin regimes - the remaining 309 were on regimes that could not be classified.

The HbA1c results for the different regimes were as follows:

BMI [weight] was not significantly associated with HbA1cs. Insulin dosage was unrelated to hypoglycaemia but was significantly correlated with diabetic ketoacidosis [DKA], with higher insulin dose associated with poorer metabolic control and more frequent DKA.

Comparison of the 1998 and 2005 studies

·       Participants in the 2005 study had a higher BMI and were on more intensive regimes than in the 1998 study.

·       There has been no significant improvement in HbA1cs and no difference in the frequency of hypoglycaemia.

·       Only two centres significantly improved glycaemic control compared with 1998 but this was not explained by intensification of insulin regimes. 

So what did the researchers conclude?

Despite many changes over the past 10 years including increased use of insulin analogues, basal bolus regimes [4 injections + a day] and pumps:

·       those using twice daily free mix of soluble/regular plus NPH [intermediate-acting] and had lower HbA1cs than all other groups. “This suggests that the so-called conventional regimes may be superior to modern intensive regimes.”

·       HbA1cs on pump therapy were not significantly different from the total group even in centres where considerable numbers of patients were using them.

So the researchers concluded that despite major and continuing changes in insulin and insulin regimes, glycaemic control has not improved over a decade in 21 international centres.

So back to injecting at school………..

Glycaemic control and a happy childhood are paramount for our children with diabetes. The above evidence gives choices that you and your clinic may not have considered. If injecting at school is a problem or your child does not want to have so many injections, the alternative of twice daily injecting is an option  especially as it appears to give the best HbA1cs, needs a lower daily insulin dose that reduces the risk of diabetic ketoacidosis and less weight gain!

Information packs for teachers and for parents

Children and young people with diabetes are a particularly vulnerable group as the grow up with diabetes. We know from parents' experiences that school can present problems for children with diabetes and additional worries for parents. So we have developed Information Packs to try to help and alleviate some of these problems. 

·         Parents Pack

This contains information that is especially for parents with children:

Introducing IDDT to Parents:    Diagnosis and its impact

Effective liaison with schools
Sports activities in children and adolescents

Diabetes family fact sheet:        Answers to some common questions

Glossary of terms:                     Understanding some of the terms

Hypoglycaemia in children leaflet

Information card to give to the teacher: a card for you to fill about your child's diabetes to give to the teacher containing your contact details and your child's hypo symptoms, likely times that hypos may occur, emergency food/drink, dietary details.

·         Teachers Pack

Teachers have much to deal with and cannot be expected to be familiar with all the medical conditions that children in their class may have in any given year, so IDDT's Information Pack for Teachers has been sent to 26,000 primary schools across the country. We are happy to send as many Packs as necessary to schools and to supply it to parents for them to give to their child's teacher. We hope that this will help teachers to be aware of the needs of children in their class and give parents more confidence that the school has an understanding of their child's needs. 

The Teachers Pack contains the following:

Introducing IDDT to Parents:

Diagnosis and its impact
Effective liaison with schools
Sports activities in children and adolescents

Learning with diabetes:  A colour supplement about hypoglycaemia which opens into a poster describing the various symptoms of hypoglycaemia for the staff room notice board.

Diabetes family fact sheet:  Answers to some common questions

Hypoglycaemia in children leaflet

Sponsoring needy children with diabetes in India:   an idea for a school project where children in the class could help poor children in India whose families are too poor to afford their life-saving insulin and medical treatment.

·         Parents Bulletin

This is a quarterly news bulletin for parents of children and young people with diabetes and contains up to date information and provides an opportunity for you to express your views and experiences.

All the above are provided FREE of charge by IDDT and with membership of IDDT you also receive the general quarterly newsletter.

Information and research that may be of a practical help.

This section covers just some of the research that has been carried out that may be of practical help in managing your child’s diabetes or that may offer some possible explanations for just some of the mysteries of day to day living with diabetes in your family. However, when looking at research we must always be remember:

• Studies are never the last word on a subject and often more research is necessary before the results should be put into practice.

• Research is often carried out on specific groups of people and therefore the results cannot be extended to assume that the effects will be the same for everybody with a condition or disease.

•  Research is often carried out using small numbers of people and this will not necessarily prove a theory or demonstrate all the adverse effects of a treatment or drug. More research with large numbers of participants is necessary.

• Research that is published in reputable journals is peer-reviewed by experts but there is a great deal of research which is not published, not necessarily because it is not good research, and therefore we are not receiving the complete picture. In other words there is a publication bias.  

Artificial Sweeteners in drinks for children

Research in children between the ages of 2 and 4 shows that they are close to exceeding the accepted daily intake of saccharin and that the main sources of sweeteners are in concentrated soft drinks like squash.

From July 1996 new legislation came into effect to try to reduce these levels. Sweeteners should no longer be added to normal squashes but only to drinks labelled as ‘sugar free’. There are also rules about dilution so that labels must make it clear how diluted the squash should be. For children with diabetes and no doubt their brothers and sisters who will all drink sugar-free squash regularly this is particularly important.

Examples of what sort of information should be clearly labelled:

• One part squash to six parts water.

• If for toddlers add extra water.

• Labels giving diluting instructions according to the child’s age [obviously this is the best labelling.]

Accuracy of insulin doses in small children

Small children with diabetes usually require small doses of insulin. In this case it is particularly important that insulin doses are accurate because a small variation on a small amount of insulin could be significant in controlling blood glucose levels and could be the cause of erratic results.

A study published in ‘Diabetes Care’, January 1996 involved ‘caregivers’ of children with diabetes and 10 of these were parents who shared the responsibility of injecting their child. It was found that one person’s estimate of a specific dose was not the same as another and especially with small doses – this varied by about 0.25 units in either direction. This variability occurred in the spouse pairs just as much as the unrelated people.

Clearly this could mean that the child may receive the prescribed dose of insulin but on any given day doses will vary by 0.25 units up or down. This could affect blood sugar levels and account foe unexpected results. The researchers offered several possible ways of combating this problem while still enabling parents to share the responsibility of injections:

• One parent always giving the morning injection and the other always giving the evening injection.

• If the parent is going to be away for their usual injection, then pre-fill the syringe or several syringes if necessary.

• If the child goes into hospital then it may be preferable for the parents to give the injections.

• Use a syringe with wider spaces between the markings for greater accuracy – 0.3ml and 0.5ml syringes are available.

Hypoglycaemia in adolescents

A study published in Diabetic Medicine has shown that symptoms of hypoglycaemia vary in adolescents with diabetes compared to adults with diabetes. Hypoglycaemia was induced in 20 adolescents who had diabetes for an average of 5.4 years. All of them had acute autonomic symptoms [classic warnings] although those with tight control had to have lower blood glucose levels before the hypo symptoms occurred. The most common symptoms were hunger, tiredness, feeling weak, feeling warm and trembling. However the sweating response was absent in the adolescents but not in the adults.

Hypoglycaemia in young children

Researchers in Australia monitored 60 children with IDDM who were using conventional therapy to assess the incidence of night hypos. They found that over half the children under 5 years and over a third of the children between 5 and 81/2 years had hypoglycaemia at what the authors describe as, an unacceptable level.

Journal of Paed 1997: 130: 366-72

IDDM in early childhood: Glycaemic control and associated risk of hypoglycaemic reactions

This study, carried out in the US, was designed to assess the level of glycaemic control; and to find out whether near normal control, as measured by HbA1cs, leads to frequent hypos in children with IDDM under 9 years old. The children were divided into 3 age groups – 0-2, 22-5 and 5-9 years old and they were followed for 2 years. Their insulin requirements, HbA1cs and hypoglycaemic reactions were analysed. The results showed that HbA1cs were higher in the first two years after dignosis in children under 2 years compared with the other age groups despite increased doses of insulin. Severe hypos were more common in infants [55%] and children 2-5 years [45%] than in children 5-9 years [13%]. In all age groups the average HbA1c values closest to the hypo and for the whole of the study period, were similar and were below 8%, the target set in the DCCT. The authors conclude that tight control is possible in young children but it may lead to increased severe hypoglycaemia. They recommend that children under 5 years old should have a higher target for their HbA1c levels.

Mayo Clin Proc 1999 Mar; 74[3]: 211-216

Partial remission phase of diabetes in children younger than age 10 years

There is renewed interest in the partial remission [honeymoon period, where insulin requirements drop after diagnosis] in recently diagnosed diabetes because of the possibility for pharmacological and immune intervention to reserve the insulin producing beta cells in the pancreas. 95 children were investigated to assess the influence of age, sex, diabetic ketoacidosis [DKA], admission at diagnosis and ethnicity on the frequency of remission and the insulin dose during the first 2 years after diagnosis.

There was partial remission in 41 children with no differences between the age groups 2-4 and 5-9 years. There was no remission in the 5 children aged 2 or under.45 of the children were admitted to hospital at diagnosis and 26 of them had DKA. In this group the researchers were unable to show any differences in the rate of remission in relaion to DKA, admission to hospital at diagnosis, sex or ethnicity. There were no differences in the insulin requirements in the different age groups by the end of the 2 years and at this time 7 of the children still only required doses of less than 5 units per kg per day, the defined dose level for partial remission. The researchers suggest that even in pre-school children there is the potential for trying to preserve beta cell function.

Arch Dis Child 1999 Apr; 80[4]: 367-369

Note: a similar study looking at adults diagnosed with IDDM and treated with a multi-dose regime showed that 61% entered remission. Male patients were particularly prone to it and the shorter the time of the classic symptoms before diagnosis and the presence of normal serum bicarbonate at diagnosis were strong influences on the pattern of this remission.

J Am Coll Cardio 1999 Mar; 33[3]: 612-619

Factors influencing weight and height development in children with diabetes

In this study measurements of weight and height were recorded in 634 children with IDDM from diagnosis onwards. The average age at diagnosis was 9 years and the vast majority of the children were on 2-3 injections a day rather than multiple injections. The results showed normal development until puberty with a tendency towards stunted growth and being overweight after that. Being female and having multiple injections were associated with being overweight. Blood glucose control before and after puberty appear to influence growth deficiency.

Diab Care 1997; 20[3]: 281-285

Girls with diabetes are more overweight than their non-diabetic peers

A study in Finland compared 48 girls with diabetes between the ages of 10 and 19 years with the same number of girls without diabetes. The results showed that the girls with diabetes were more overweight than the non-diabetic girls. The researchers maintain that a more effective method of preventing this is needed as part of the treatment for diabetes.

Archives of Disease in Childhood Nov 1995; 73: 398-402 

Parental distress affects children with diabetes

Researchers in the US have found that behaviour problems in children with IDDM are not related to the medical diagnosis of diabetes, but to their mother’s depression and the parental distress at diagnosis. They investigated 114 children with diabetes, 107 children with juvenile arthritis and 88 healthy children. They found that diagnosis of diabetes or arthritis in the children was associated with depression in mothers and distress in both parents. The children did not appear to react to the diagnosis of a serious medical condition but they did react to their parents’ reactions.

Arthritis Care and Research 1998; 11: 166-176

Changes in attention with hypo and hyperglycaemia in children with IDDM

Researchers in Austria compared the results of a computerised attention test in 38 children with IDDM in relation to various spontaneously occurring blood glucose levels. The levels used were <3.3mm0l/l, 3.3-8.3mmol/land .8.3mmol/l and they found that the attention varied significantly with blood glucose levels. The highest number of errors and longest response time was observed during the test run for hypoglycaemia.

The results showed that attention in children with diabetes was significantly reduced compared to the norms for the test. This was especially noticeable during mild hypoglycaemia. These results were not influenced by age, sex, age at diagnosis, metabolic control or the results of the intelligent test. The authors conclude that in children with diabetes a significant reduction in attention was found not only at mild hypoglycaemia but also at low normal blood glucose levels. This shows that attention deficits may occur in children with diabetes even before they are aware of any hypo symptoms.

Eur J Pediatr 1998 Oct; 157[10]: 802-805  

Practical aspects of managing pre-school children with Type 1 diabetes

Doctors from Germany have written recommendations for managing diabetes in this young age group and these recognise that he difficulties are common because of day to day variations in diet, exercise and large variations in the glucose response to small changes in insulin dose. They also recognise that problems with hypos at a young age show evidence of subtle cognitive deficits [aspects of brain functions are poorer] when tested during adolescence.

In this study the diabetes team set specific glucose targets for this age group: Before meal levels of 6-12mmol/l and bedtime levels of 8mmol/l. The treatment was twice daily or multiple injections, dietary adjustments, family education, support groups and 24 hour hotline facilities. They showed that all of this can help to achieve good control without severe hypoglycaemia and that using frequent counselling and a caring team approach is effective.

Acta Paeditr Suppl 1998 Oct; 425: 67-71  

Practical aspects of managing diabetes in adolescents

Between 1988 and 1990 screening for HbA1c and albumin excretion rate in children with diabetes was carried out throughout Denmark, each study including 1000 patients. The results showed that despite 60% of these young people being on three or more injections per day, HbA1c levels were raised [average of 9.5-10%]. Persistent microlbuminuria was present in 4.3% and this was associated only with age and diastolic blood pressure. These results have been compared with a recent international study that showed the following results:

• HbA1c levels of 8.6% but these varied significantly between centres.

• Severe hypos were related to a young age and low HbA1c.

• There were no significant differences in glycaemic control between adolescents treated with two, three, four or more injections per day.

• Those on four or more injections per day were using significantly more insulin.

• Girls on four or more injections had a significantly higher body mass index [weighed more] than girls on twice daily injections.

• Children under the age of adolescence on pre-mixed insulin had similar HbA1c levels to those on a combination of short and long acting insulin, but adolescents had significantly better results with individual combinations of short and long acting insulins.

The authors conclude that despite intensive diabetes management, particularly in adolescence, near normal blood glucose levels are achieved in only a few people.

Acta Paediatr Suppl 1998 Oct: 425: 72-76 

The psychosocial ramifications of childhood diabetes

Leicester General Infirmary [ref 1]carried out semi-structured interviews with the parents of 10 children with diabetes to look at the effects of childhood diabetes on the family.

• All parents reported sustained additional stress, more intense in mothers and especially single mothers.

• Hypoglycaemia was a constant major anxiety and 6 families had not been warned about severe hypos.

• Family cohesiveness was strong and sibling rivalry and jealousy did not feature.

• Diabetes was at the centre of family functioning.

• The parents views on their education about diabetes varied, although all said it was good initially 70% felt that it had been withdrawn too early.

• More practical dietary advice would have been appreciated.

• All felt they would have benefited from more counselling and help with learning to cope.

The researchers concluded that the ramifications of childhood diabetes were marked even in the so-called ‘well-adjusted family’.

Ref 1 Diabetes Medicine, EPCS Abstracts and Posters 1996

Comments – What is a well-adjusted family and who makes that judgement? I for one, as a parent, did my utmost to hide the fact that I was not coping because it seemed like an admission of failure. I should think we looked like a ‘well-adjusted family’ to the diabetic team!

Sibling rivalry may not have been an issue for the parents, but they did not ask the siblings if it was an issue for them!  

Results from the Yorkshire childhood diabetes register

In June 1999 Diabetes Care published the results of a study that examined the hospital obstetric and neonatal records of 196 children with diabetes who were listed on the Yorkshire Childhood Diabetes Register . Each child with diabetes was matched with two control subjects of the same age and gender. After comparing the 325 control subjects’ hospital records with those of the diabetic children they found that the risk of diabetes is increased in

• births to older mothers,

• mothers with Type 1 diabetes,

• high blood pressure during pregnancy

• neonatal illnesses.

As in previous studies, they also found that children who are breast fed immediately after birth may develop better defences against Type 1 diabetes.

Family Relationships.

As an organisation whose members have the practical experience of living with diabetes, one thing that we are all very aware of is that diabetes affects everyone in the family. This is probably especially so when it is your child and being aware of this may help to prevent some of the pitfalls which make life more difficult. Everyone in the family has their own way of coping with diagnosis and the subsequent changes in the life of the family. We all react differently so it is impossible to cover all the various dynamics in all families. Here are just a few examples that may help you to realise that your family is not alone with your experiences and concerns.

Mums and Dads

However strong a marriage or relationship is, it is important to recognise that diabetes, like any other chronic condition will put a strain on that relationship and diabetes in the child that you both so much care about, is no exception. It can, and often does, bring couples closer together at time of diagnosis:

Quote from a friend of a family where one of the children had been diagnosed 12 months earlier. "You seemed a very close family. It was as if you had all closed ranks and didn’t want to let anyone else in."

But is that the case when living with diabetes 24 hours a day, 365 days a year every year? Sometimes the day to day stress can affect the parent’s relationship with each other and cause conflicts.  

Responsibility

It is best if the responsibility for your child’s diabetes can be shared but very often, because of circumstances, one parent takes most of the responsibility. This is usually for very practical reasons – work. So, by force of circumstances, it is the often Mum who shoulders most of the responsibility, although the following can apply just as much to Dads who shoulder most of the responsibility. Here are just some of the possible effects, citing Mum as been the main ‘carer’:

• Dad feels excluded and Mum feels he doesn’t do enough or is not interested. Resentment builds up.

• Mum feels that their child’s diabetes has become her sole responsibility and then resents Dad having an opinion on decisions about control or approaches to diabetes within the family.

• The worry and energy spent on ‘getting everything right’ makes Mum tired and irritable and arguments easily develop.  

Visiting the diabetic clinic

This should be seen as helpful but it often feels like the third degree and a test of the competence of the parents. You have been set blood glucose targets for your child and these may well have not have been achieved. [I say this as an old hand at parenthood because I concluded that all too often the targets are unachievable if you want any sort of life that is not totally ruled by diabetes!] However, the fact that you are questioned about these and why the results are not what the health professionals at the clinic would like to see, makes you feel guilty, ashamed, a failure. Worst of all, you feel you are letting your child down and at risk of affecting their future health. You may also feel angry with them for making you feel this way when you have being trying really hard ‘to get it all right’. This is something the parent who does not attend the clinic does not have to go through and they probably cannot understand the effects this can have. It is easy for resentment to grow against the parent who escapes this ritual.

Fear of hypoglycaemia

This is very common and understandably so. It is a time when we have to make decisions and take action and we feel a great weight of responsibility for the outcome. Severe hypos at night are frightening, especially if accompanied by seizures and, whether the fear is rational or not, we sometimes fear that our child will die. All of this can result in:

• Conflicts from one parent wanting to raise blood sugar levels in future to avoid future night hypos and the other parent not agreeing because of their fears of the long-term complications.

• Both parents not sleeping well and being tired etc. The parent who has to go to work the next day assuming that their sleep should be less disturbed and the other seeing this as a ‘cop out’!

• Because of fears of night hypos, one parent sleeping in the child’s bedroom – not good for the relationship between the parent.

Quote from a Mum. "It seemed at one point every time we had sex Gabby knew and walked into our bedroom in a hypo. I found it difficult to have sex and my husband could not understand why – he thought I was being irrational and that I no longer cared for him.

• Not feeling able to go out for an evening together because of the fear that the babysitter not being able to handle a hypo gives parents no break and freedom, not even for a few hours. If both parents are not happy with this, it can lead to fewer activities together as a couple and doing more things separately. Even worse, it can mean that one partner is always the one to go out.

Quote from one Mum. " We didn’t used to argue very much and then only about one thing – money! Now we argue a lot more and about two things – diabetes and money!"

Siblings and their rivalry

It is unavoidable that sometimes your child with diabetes comes first:

• At diagnosis everything centres around the child with diabetes.

• Hypos have to be dealt with instantly, even if you are helping his brother or sister with homework.

• Mealtimes often are influenced by diabetes and so is the food the family eat.

• Clinic visits have to fit into the family routine.

• At times of illness or emergency the needs of your child with diabetes do come first.

• Depending on their ages, it is easy to ask the brother or sister to ‘keep an eye out’ without realising that this is a responsibility that they don’t need or want. If the children go to the same school, it is not uncommon for the teachers to ask the brother or sister to help with a hypo.  

The list is almost endless and it is obvious that diabetes in the family is going to affect the brothers and sisters in many different ways. It can and often does bring them closer and they show a protective approach if anyone criticises their sibling with diabetes. But at the same time it is natural that there may be some resentment and jealousy. Families have to work their way around these problems but being aware of the possible problems and attempting to meet them before they develop into permanent sources of conflict and sibling rivalry is half the battle. Talking about the problems within the family is important and it is not unreasonable to apologise to the brother or sister for perhaps not spending as much time with them as you would like. They need an explanation, albeit, within the limits of their age and level of understanding. They need to know that you love them just as much as you always have and that because diabetes is serious it sometimes has to come before everything else.

Tip from a Mum. "I found that blaming diabetes rather than my daughter [with diabetes] was the best way around problems – we could all hate it together then. It helped to make my son realise that when things were difficult, it was not his sister’s fault but the fault of diabetes."

Quote from a sibling. "Often one of the first signs that my sister was hypo was that she would get bad tempered and argumentative – this often happened before Mum realised that she was hypo and so we would both get into trouble. Then the penny would drop and my sister was given sugary foods. She came around feeling happy again, totally unaware that we had been very angry with each other, but I remember being left still feeling angry with her. Even though I knew she’d been hypo she had still made me angry and a biscuit for me didn’t sort out how I felt!" 

But let us not forget that sibling rivalry works both ways!

Just as we can see that the child without diabetes feels jealous and envious, the child with diabetes can feel jealous and envious of their sibling because they are well and don’t have diabetes. They may even feel that you love their brother or sister more, because they don’t have diabetes – perhaps a difficult concept because so much more time, energy and worry seems to go into the child with diabetes!

A point worth remembering at times of conflict. What is the first thing we do in the mornings with our child with diabetes – blood test, injection and then breakfast. Essential but not the nicest way to start the morning! If injections and blood tests are difficult and a struggle to achieve [in young children and teenagers, for example] then there may also be a battle! So it is hardly surprising that they feel that you don’t care about them compared to their sibling. The role of a Mum is expected to be loving and caring - the person who protects, supplies comfort and does all the nice things. This image falls down when your child has diabetes - Mum has to do or instigate all the nasty things, starting straight away in the morning! No wonder they can feel unloved and resentful.  

Grandparents

As parents going through our own grief at the time of diagnosis and having to learn so much, we are perhaps unaware of the effect it can have on our parents [our children’s grandparents]. 

A personal experience

My daughter was diagnosed when she was 5 and her brother was 6 – they had two grandmothers but no grandfathers. My mother had difficulty believing that Bev had diabetes and she was upset and emotional for a very long tome. Perhaps only now that I am a grandmother myself do I truly understand what she felt like. Grandchildren are very special – we can enjoy them, we can spoil them and we are free from the responsibilities we had with our own children. So I can now understand why my mother felt so upset when Bev was diagnosed – it also seems so unfair that we are older, that it is someone so young that should have lifelong condition like diabetes.

I’m quite sure that she sometimes felt I was being hard with Bev without realising that I was doing what I had to do and what was best for her. But I was lucky, she never interfered or criticised. But I know of other families where this has not been the case, probably because of the difficulty the grandparents have in accepting diabetes in the family. The grandparents have interfered, have paid more attention to the child with diabetes, so leaving the other grandchildren feeling left out and ignored. However unintentional, they leave emotional chaos behind them after a visit.

I have to say that my mother-in-law, Bev’s other Grandma, reacted in a very different way. There were similarities in that it was as if she had difficulty accepting it too, but her way of handling this was to ignore it. I don’t think that she ever understood the seriousness of diabetes or the effects it had on our family life. This was her way of coping and we are all different. It later became a family joke because it was tradition that she made the first cup of tea on Christmas morning and she always asked if Bev took sugar, every single year up to adulthood! 

Babysitting

One of the most useful roles that grandparents play is as babysitters, especially in nowadays when both parents need to work. But this is often difficult for parents and grandparents.

We, as parents, naturally find it difficult to leave our child with diabetes even with our own parents and they may feel that they cannot baby sit because the weight of responsibility is too great or they do not feel to know enough about diabetes. These reactions are both understandable but it does limit what the parents can do and it denies the grandparents the pleasure of looking after their grandchildren.

Quote from a parent. "My mother learnt about hypos, testing and food and I learned to leave my daughter with her for a couple of hours during the day to start with. Of course, I was always at the end of a phone. I could leave her for overnight stays because she sometimes had severe night hypos and this would not have been fair on my mother and nor could I have slept!"

Research quote:

Winthrop University Hospital in the US held an educational programme for grandparents of children under 6 with diabetes. They learnt about injections, food, hypos and glucagon. None had provided overnight care but 50% had provided daytime care. There was a 3 month follow up after the programme and none had ‘graduated’ to overnight care – the reasons that were given were geography and parental fear of allowing other to care for the diabetic child overnight. However most grandparents felt much more confident and more able to look after their grandchild, especially if an emergency occurred, and they all felt to benefit from meeting and talking with other grandparents. 

TEENAGERS LIVING WITH DIABETES

Dr Clare Williams, Institute of Education, University of London

Through working as a nurse and a health visitor for 20 years I had become very interested in the different ways in which people incorporate conditions and treatments into their lives. When the chance came to study for a PhD, I decided to look at how teenagers with diabetes live with their condition. Being the mother of a teenage girl, I was also interested in the role that parents play in helping their teenagers to become independent. Instead of sending out questionnaires to lots of people, the type of research I chose to do – qualitative research – aimed to explore the experiences of fewer people in much more depth, to find out their perspectives.

Who did I interview?

I interviewed 20 teenagers between the ages of 15-18 years, ten boys and ten girls. I also interviewed whichever parent the teenager said helped them the most with their diabetes management – in all cases this was the mother. I wanted to interview people from as many different settings as possible, so I contacted various hospitals and GPs in my area. I received a good response when I placed letters in ‘Young Balance’ and ‘Balance’ asking for anyone interested to contact me. I also talked about my research to whoever would listen and made some contacts that way. 

What did I find?

Did mothers think that teenage girls and boys had different needs?
Mothers of girls were much more likely to talk about their daughters being in control and responsible than the mothers of sons, both generally and in relation to the way they managed diabetes. Daughters and sons were seen by mothers as having different needs, although this wasn’t because sons were seen as sicker than daughters. In fact, the mothers of boys were much more likely to describe their sons as very fit than the mothers of daughters. Instead, boys were seen as less able to care for themselves than girls of the same age and consequently, as more in need of the help of their mothers. I’m going to use some quotes from the people I interviewed to illustrate the various points, but I have changed the names so they can’t be identified. For example Martin’s mother told me:

"Girls always seem more organised I find, and you know, she’ll take the little blood testing kit or whatever for going away, everything is packed and organised whereas Martin will, as we’re going down the road, say "Oh, did you get my insulin?" (son aged 15 years and daughter aged 12 years, both with diabetes). 

Did teenage boys and girls manage diabetes in a different way?

Yes, there did appear to be a marked difference in how the majority of teenage boys and girls I interviewed lived with diabetes. 

Boys’ management of diabetes

The boys I interviewed were much more likely than the girls to describe diabetes as only having minimal effect on their lives. They were also much more likely to try and keep diabetes and its treatment hidden in public settings, as far as they could. This meant, for example, that they were much less likely than the girls interviewed to give themselves injections at school. Martin’s mother told me:

"He won’t do them (blood sugars) at school now, he absolutely refuses, he won’t even do an injection at school. He is on three injection a day and the hospital would like him to go on to four but he won’t do it in front of his friends, and he doesn’t like the fact that he is diabetic in that respect, he wants to be normal."  

Mothers often helped their sons to ‘hide’ diabetes in public, and this was one of the reasons that mothers felt boys needed more help than girls. Julian’s mother told me:

"His diabetes is managed purely from here (home) – once he goes out of the door as long as he has got some glucose tablets and his lunch in his bag, he’s no different to anyone else, which is good really". 

It seemed that the teenage boys interviewed were worried that any signs of ‘illness’ could be seen as a weakness by others. Consequently, boys tended not to talk about diabetes with friends and often chose not to tell teachers about it, which meant that their mothers sometimes had to do this for them. For example, mothers told me that if they were worried about their son they might ring up the school, but this wouldn’t be discussed with their sons. A lot of the help that mothers gave their sons tended to be ‘invisible’, in that the boys didn’t seem to realise that things were being done on their behalf. In fact, many mothers felt guilty for giving the help they did, as they often felt under pressure from health professionals to encourage their sons to be independent. This is similar to research findings on adults, where women tend to be the family members who take care of health in a variety of subtle ways. 

The majority of boys I interviewed had good control of their diabetes. They tended to manage diabetes in a fairly ‘rigid’ way, which meant that they felt in control of it and it was ‘no big deal’. However, there was a small minority of young men with serious problems that I only came into contact with through my letter in Balance. I was contacted by their mothers, but the young men themselves refused to be interviewed. The lives of these mothers were severely affected because of their knowledge about their sons’ non-adherence to treatment. Harry’s mother told me:

"He tells people that he’ll be dead soon anyway so it doesn’t matter what he does, and that seems to be his whole attitude really….so I’ve given up now, I might as well not say anything….he just doesn’t want to do it, he doesn’t want to know….I feel like I’m watching him kill himself, and there’s nothing I can do about it, absolutely nothing". 

The results of my study indicate that teenage boys are more likely than teenage girls to move between two extremes, with the majority managing very well and a small minority managing very poorly. As mothers are likely to be involved in helping boys manage, they are usually the first person to detect problems arising. However, some mothers reported that when they alerted health professionals, they were made to feel as if they were ‘fussing’ unnecessarily.

Girls’ management of diabetes

It seemed more acceptable for girls to admit that they had diabetes, and girls were much more likely to tell teachers and their friends about it. In many ways the girls I interviewed appeared – superficially at least- to manage diabetes well. For example, they were much more likely to follow the four injections a day regime often recommended by health professionals, which meant performing insulin injections at school. However, there were other factors which affected their overall control which I think may tie in with the BDA Cohort Study findings, which identified young women with diabetes as at a greater risk of premature death than young men.

Firstly, I found that teenage girls had often felt under pressure from health professionals to take responsibility for their diabetes management and mothers had little control over the situation. Susan’s mother said:

"I have never once given her an injection from the age of eight – she has always refused any help, and I used to think that maybe sometimes this was far, far too much for her. It was (from the medical profession), "it’s your diabetes Susan, you’re in control, you’ve got to handle this, and you’ll be responsible", and I mean, she just sort of took this on board and that was the end of it".

Following publication of my letter in Balance I was contacted by a number of young women in their 20s who wanted to talk to me about their experiences as teenagers with diabetes. One of these, Louise, reflected back on when she was first diagnosed as having diabetes at the age of 11 years:

"My mum told me that the hospital stressed very much that my parents, they needed to let me have control –I was old enough to be able to do this myself….so as soon as I came out of hospital it was all down to me…. I showed I could cope in a way on the outside, but on the inside – the emotional side I couldn’t cope with it all, I didn’t really start coping until I left home".

One of the consequences of this was that the mothers of teenage girls seldom had much knowledge about how their daughters managed diabetes, in contrast to the mothers of boys, who tended to be more involved in the day to day management themselves. The level of control girls chose to achieve was very much up to them, whereas most of the boys were advised and supported by their mothers. 

Of the ten girls interviewed, four had intentionally had often lengthy, and potentially harmful periods of non-adherence to treatment, of which their mothers, and others, were usually unaware. This could take the form of injecting themselves with less insulin than they needed, or even skipping injections completely. It was hard for the girls to explain why they did this, because they often made themselves feel ill. Whatever the cause, one of the resulting effects was that many of the girls expressed feelings of guilt and shame which were not expressed by boys. Reena told me:

"I do feel guilty quite a lot, because I’m thinking, "I’ve ruined everything". Like, the doctor said I would have been taller but he said it was because I didn’t control it that well I haven’t grown that much". 

Two specific aspects of diabetes management which also led to girls expressing feelings of guilt were diet and exercise, and these were also the two main reasons that girls saw themselves as ‘unhealthy’. Teenage girls are generally more concerned about their body shape and weight than boys, and it seems that the emphasis on food and weight in the management of diabetes can bring additional problems for girls. Jemma told me:

"I’m on a diet now because I’ve been eating too much and I want to lose weight. I’m conscious of how much I weigh, and even though I eat, I know I shouldn’t be eating so I feel terribly guilty and go out and eat some more because I feel guilty, and it’s a vicious circle, so I’m not healthy at all". 

Similarly, the value of exercise in controlling diabetes could also disadvantage teenage girls, who often participate in little exercise or sport. This in contrast to most of the boys, who usually played a lot of sport and described themselves as very fit.

I have tried here to present some of the key findings from my research, although it has been very difficult to summarise 90,000 words succinctly! I would be really interested in any thoughts you might have about the issues raised. I have also written articles for health professionals, although I know that many read the IDDT newsletter. I can’t finish without saying a very big thank you to everyone who went out of their way to help me with my research.

Growing Up with Diabetes

Growing up is not easy and growing up with diabetes or any chronic condition makes life that much more difficult for your child. This is something that we can recognise and try to understand, but unless we have actually had the experience ourselves we don’t know how it really feels. This is perhaps something that our teenagers with diabetes will remind us of on many occasions!

Here are just some of the experiences that our children may have as they grow up:

• Feeling different from other children.

• Being treated differently from other children at home, at school and socially.

• Not feeling as good as their friends or the other children at school – having a low self-esteem.

• Being aggressively determined to be as good, if not better, than everyone else.

• Being frightened of looking foolish if they have a hypo at school or when out socially and being called names.

• Feeling pressurised to achieve and do everything, by messages of being ‘normal’ when they don’t feel normal.

• Being excluded from school activities or parties because they have diabetes.  

The feelings and experiences of our children with diabetes will vary with the age of diagnosis and there will be different effects for them and for the family. It is difficult to grow up with diabetes from a young age and perhaps never know what it is like to not have diabetes and be treated normally. But it is equally difficult to be diagnosed in the teenage years – perhaps more difficult. Suddenly being faced with diabetes and all the changes that this means in both lifestyle and self-image during the teenage years, are all happening at one of the most difficult stages of growing up. 

One mother’s Experiences of the teenage years!

When my daughter was quite young I remember her going through a phase of believing that no one would want to marry her because she had diabetes. When I was young I believed that no one would want to marry me because I had straight hair and wore glasses. The answer to that is relatively easy – you can have a perm and wear contact lenses! Not so easy to hide diabetes or to give reassurances to a 10 year old.

So when boyfriends started to appear on the scene at 14 or 15 years old there was always the worry of "when do I tell him about diabetes?" At this age she was very reluctant to tell anyone about it – she just wanted to be like her friends. The good text book standard advice of always tell your friends that you have diabetes, just in case….. really was totally ignored and understandably so. Teenagers are teenagers and with or without diabetes, they do not want to be different from their friends.

So what do a parent do in this situation? Perhaps this question should be " what can you, as a parent, do in this situation?" I think perhaps the answer has to be – nothing. Sit back, keep your fingers crossed, hope and have a bit of faith.

• Hope that in the long run common sense and self-preservation will prevail. Hope that in the short term if she does have a hypo while she is on the date that it won’t be that bad that she can’t handle it before he notices. Hope that if the worst comes to the worst and he discovers that she has diabetes before she has told him, he’s a nice lad and is not put off.

• Faith is very important and sometimes very difficult when we see our teenager at home breaking all the rules, being stroppy and from tome to time being fairly objectionable! But having faith is very important to give your teenager the confidence th