“My son is a Type 1 diabetic, but I don’t want to be overly protective and make him feel he can’t do anything. Do you have any tips for parents of diabetic children, and how to make life normal?’ Sam Shongwe.
The first thing you must realise is that a child with diabetes is still a child. He should not be treated differently than a child who does not have diabetes. Granted, you have more issues to cope with – like good food choices, insulin and testing – but these things shouldn’t stop him from having a normal, happy childhood.
The first thing to do is make sure he is safe at school. Let a responsible person know what his diabetes involves so that they can keep an eye on him. By doing this you won’t have to keep phoning him or the school to make sure he is okay: this will only embarrass him and make him withdraw from friends and fun.
Remember, he can also play sports and take part in physical activities just like any other child: you just need to plan – first talk with his doctor, and then help him with the routine of glucose testing, planned eating, and insulin. Work out a plan that he’s happy and comfortable with.
Encourage your child and allow him to socialise. Let him do parties, sports, sleepovers and camps if he wants to. Discuss a back-up plan with him when he does, but try to let him do his thing.
Most importantly, help your child to become more independent by getting him to take an active part in his diabetes care while he’s still young. Encourage him to solve problems and make choices with you about adjusting insulin doses, for example. Help him create a good lifestyle so that his diabetes doesn’t become too difficult to manage and hijack his life. Self-care is the key to developing any child’s independence and self-esteem: it’s important to get your child involved in self-care as soon as he is able to – with your supervision, of course.
Finally, recognise your limit of control. Accept that you cannot watch over him all the time, stand back and allow him more independence as he becomes more confident and responsible. It’s the same with any child: if they prove their responsibility, they get more independence.
– Jeannie Berg, Diabetes Educator
Do you know what brittle diabetes is? We asked one of our readers, Rencia, to share her story of living with brittle diabetes with us.
I was diagnosed as a juvenile diabetic at the tender age of 5 and a half. This was in 1987, when medicine was not as advanced as it is today.
Upon diagnosis, my parents were told that I would have to take insulin twice a day for the rest of my life and refrain from eating sweets, cakes and all the good things. At that point in my life I couldn’t grasp the enormity of being diabetic. I adhered to the diets and adapted quickly to the injections and glucose testing methods. I would often hear my parents discussing how doctors had advised them that I needed to be told that due to my diabetes I would never conceive children.
The strict control became non-existent when my parents got divorced. I guess as a teenager I didn’t understand the repercussions my teenage years would have on my life.
At the age of 19, I began to notice that my vision was being halved. I went to an ophthalmologist who had me undergo all kinds of tests to determine what the problem was. I was suffering from diabetes retinopathy: when the retina detaches from the back of the eye. If not treated as soon as possible, this leads to permanent blindness. I underwent my first eye operation to reattach the retina in my right eye and had to wait four months with sight only in my left eye. During the 4 months, I lost the vision in my left eye too and for the remainder of those months I had no proper vision, just distorted images in my right eye.
After the operation to my left eye, I became critically ill with hyperglycaemia (high blood glucose levels). I was in a coma for a few days. At this point I was being treated by my current specialist. He changed my insulin and put me on four insulin injections a day, as well as four blood tests a day. I had a new lease on life it seemed and I would take hold of it with both hands. I began to keep away from all forbidden items and all seemed well.
In mid 2007, I began having frequent lows and highs. Maintaining my blood sugar levels became more and more difficult, and it was worrying as I started losing chunks of my memory when I had a hypoglycaemic episode. I saw my specialist who diagnosed my diabetes as brittle diabetes. He explained that brittle diabetes is when you have hyperglycaemia and hypoglycaemia without much warning. There is no treatment for this, except frequent blood sugar checks.
I am often ill with mostly low sugar levels, ranging from 1.6 to 2.2. I’m seldom able to determine when these episodes occur which leads me into very dangerous ground. Brittle diabetes is a sub-type of Type 1 diabetes, a term used to describe particularly hard to control Type 1 diabetes. Those people who have brittle diabetes will experience frequent, extreme swings in blood glucose levels, causing hyperglycaemia or hypoglycaemia.
At the end of 2007, I was experiencing severe tenderness in my left eye and I visited my ophthalmologist who suggested I have my left eye removed as it was shrinking and becoming noticeable that there was no vision in the eye. I had the eye removed and 6 weeks later was fitted with a prosthetic eye.
Against all odds, I conceived my first child in 2010. It was a petrifying experience for me because I was so afraid of something going wrong. On the 4th of October 2010, I gave birth via C-section to my son Tyler. It was a very trying time keeping my levels down. I have successfully had two children – my second pregnancy was easier, though I was hospitalized three times in my first trimester. Once that was over, I maintained constant contact with my specialist and tried my utmost to keep my levels between 4 and 8mmol/l, so that I didn’t have to deal with the effects of my brittle diabetes.
Living with Type 1 diabetes is not as easy as most people thank. It’s a constant challenge and mine is slightly more difficult. However, I do try to rise to each of the challenges to the best of my ability. It’s my great desire to one day receive sponsorship in order to obtain a DAD (diabetic alert dog) – a dog trained to pick up if your blood sugar is high or low by the scent your body omits. Having one of these dogs as a brittle diabetic would be such a great help. It could be a lifesaver.
I urge parents, teenagers and even older individuals to take extra care of their diabetes from day one of diagnosis in order to prevent the challenges I face daily. See your doctors regularly and you could lead a fairly normal life. Diabetes is a life-altering illness, but with the correct care from day one you can lead a fairly normal life.
– Rencia Gabriel-Phillip
Would you like to share your story of living with diabetes with the Sweet Life community? Email us – we’d love to hear from you.
“My son has just been diagnosed with Type 1 diabetes and we all feel like our world has been turned upside down. But he’s really struggling to talk to us (and his extended family) about his diagnosis. Any tips on how to begin?” Razan Naransamy
When a child is diagnosed with diabetes, both parent and child feel different emotions. In the beginning, parents are inclined to spend time worrying about the physical effects and the day to day management of a condition they don’t yet know anything about. The child goes through different feelings, like sadness and hopelessness, even anger and frustration.
It might help to find someone your son will confide in – even if it’s just to find out why he doesn’t want to talk about his diagnosis. It could be a diabetes nurse he trusts or a psychologist or even a family member or friend. Don’t feel bad about getting help. There are many reasons he might not want to share: he might feel isolated, depressed, afraid or even angry at you. Because you are the one in charge of the tests and shots and the policeman of what he eats or does, it might be easier to blame you. He could even be feeling embarrassed because of the sudden overload of attention.
Helping your child involves acknowledging his feelings and listening to what he says. This communication does not always have to be verbal. Writing or drawing or even making music can get your child to share his feelings.
Encourage him to actively participate in his health care management. Help him to be independent. Once he starts feeling more confident and independent, he will be more likely to share his feelings of living with diabetes. Encourage him to have fun with friends and if he starts going on outings and camps with friends and other children with diabetes he will learn from them that it is okay to talk about it.
- Tell your son that he did nothing to deserve diabetes – it just happens. If he feels that the condition is troublesome for you or your family, reassure him that there’s no reason to feel guilty.
- Remember that children are likely to copy the way that their parents cope with something. Also remember that expecting a child to deal with things quickly and practically isn’t helpful to you or him. You need to set the example.
- Build a support network that you and your family can fall back on. Be informed parents.
- Make the most out of every day.
You and your son are on a lifelong journey with diabetes.
A good journey requires lots of planning, flexibility, curiosity, frequent course corrections, and an occasional attitude adjustment.
Make it a good one.
– Jeannie Berg, Diabetes Educator