Coping with a child who has diabetes

We drove to our nearest hospital, the Royal London, but by the time we were seen, Velvet was much calmer and I wondered whether it was a false alarm. A smiley nurse gave her a big dose of Calpol, felt her tummy, got a urine sample and did a little finger-prick blood test. Five minutes later she asked us a question that would change all of our lives for ever: “How long has Velvet been diabetic?”

We stared blankly at her. “It’s a tummy ache,” my husband insisted. We didn’t say anything to each other, but as we sat there, holding our little girl’s hand, I knew we were both thinking the same thing. In the last week or so, we had noticed that Velvet had started getting up to go to the toilet in the middle of the night and before we got in the car to come to the hospital she had gone to the loo and I had remarked that her wee smelt weirdly like pineapple.

Minutes later, a doctor appeared and explained to us that Velvet’s blood sugar levels were very high. “It might be a result of illness,” he said, “but the stomach pain may be the way that her juvenile diabetes has chosen to present itself.” Velvet wasn’t paying any attention and she obviously didn’t understand a word of what he was saying, but we did. Although we knew very little, we were both aware that diabetes was incurable, that it involved insulin injections and that there were all sorts of potential complications. However, neither of us could bring ourselves to ask the doctor a single sensible question, partly because we didn’t want to alarm Velvet, and partly because we were speechless.

The night wore on in A&E. Shifts changed, and a nurse came to check on Velvet. “Does she have her own insulin pens?” she inquired, breezily. “I don’t know what those are,” I replied, bewildered. As dawn broke, Velvet was taken to a ward. She was hooked up to a saline drip because she was very dehydrated and the nurses then carried out a battery of blood tests. When the doctors finally came to see us, they told us that they were pretty sure that Velvet’s stomach pain was related to diabetes, but they couldn’t make a final diagnosis, or indeed treat Velvet, until her blood sugar levels had remained consistently high for three days in a row.

We were exhausted by then, but my husband made the first of many trips home to pack supplies and we stayed by our daughter’s bedside day and night hoping that her blood sugar levels would eventually return to normal. They didn’t. On day three, the consultant confirmed what, deep down, we already knew. Velvet had developed type 1 diabetes, an auto-immune disorder that destroys the beta cells in the pancreas and stops the body producing insulin. Without insulin, Velvet could not regulate her blood sugar levels or convert sugar into energy. As a consequence, her body had begun to use her fat stores as an energy source, a process that had created a build-up of toxic ketones in her body. Left untreated, ketones can cause diabetic ketoacidosis, a serious condition which can result in coma or even death.

It was all too much to take in. My husband plucked up the courage to ask the consultant a veiled question about life expectancy and he replied: “Normal ... ish, bar the threat of complications.” It wasn’t particularly comforting and it was also less than accurate. I learnt later that the average life expectancy for a type 1 diabetic is about 15 years shorter than it is for someone who doesn’t have diabetes, because high blood sugars damage blood vessels, nerves and other tissues causing problems for the eyes, heart, kidneys and nervous system.

The consultant, who I have since come to respect greatly, seemed terribly matter of fact about the whole thing, which I confess, I found a bit irritating. “It can’t be much fun working with children who have a disease you can’t cure,” I said, tetchily. “On the contrary,” the consultant replied, “most of the kids that I see are so ill by the time I get to diagnose them that the effect of the insulin injections is like a miracle.”

He’s right, of course. Insulin is a miracle. As a registrar explained to us, the medical term “Diabetes Mellitus” comes from the Greek word for honey, and just 90 years ago the appearance of sweet-smelling urine — a classic symptom — meant that a child had less than a year to live.

I was relieved to learn that unlike type 2, type 1 diabetes is not related to diet and lifestyle, so it wasn’t our fault that this had happened. Type 1 primarily affects children and young adults and it only accounts for 10 per cent of the diagnosed diabetics in the UK. Its onset can take months or years, or, as was the case with Velvet, it can happen in a matter of days or weeks. The trouble is that, like us, very few parents are aware of the symptoms. As a result, a quarter of the 2,000 children who are diagnosed annually are already seriously ill, and ten children a year still die from preventable ketoacidosis. The most obvious signs to look out for are extreme thirst, frequent urination, tiredness and sudden weight loss, although children may also experience increased appetite, blurred vision, abdominal pain, a fruity odour on the breathe or urine, laboured breathing, and even unconsciousness.

Needless to say, I didn’t know any of this while we were still stuck in the hospital. At that point all I wanted to know was: why? Why us? Why Velvet? I have subsequently learnt that there isn’t a straight answer to that question, but there is mounting evidence that type 1 diabetes is triggered by common viruses such as flu, or the cold virus. Research shows that children with type 1 are almost ten times more likely to show signs of these infections and this explains why hospitals often see batches of diabetes diagnoses at the same time, and why more children seem to be diagnosed in winter.

Once the consultant confirmed the diagnosis, everything happened very quickly. A diabetes nurse showed us how to test Velvet’s blood sugar by pricking her finger, catching a sample of blood on a test strip and taking a reading. Then she showed us how to administer the two types of insulin Velvet would require every day, for the rest of her life. We were given two fat injection pens, one for long-acting insulin to be given before bed, and the other for short-acting insulin to be given before she ate. My husband and I practised injecting a teddy bear’s bottom a couple of times and then we were sent home from the hospital with an emergency telephone number and big bag of equipment.

That first night was terrifying. When we approached Velvet with the injection, she screamed and ran to her bedroom. Eventually we coaxed her out and pinned her down on the sofa so that we could do her blood test. We really didn’t have a clue what we were doing and she was squirming so much that I was too afraid to inject her. Finally, I resorted to bribery. “I’ll give you anything you want,” I begged. “Anything?” she whispered. “Anything, honey, as long as you stay still and let me do this one tiny injection.” She gave me a steely glare and said: “I want a puppy.” I nodded and blindly plunged the needle into her thigh before either of us could change our mind.

Like many parents, it took me a long time to come to terms with the reality of her diagnosis. After we came home from hospital, Velvet started passing blood in her stools so I spent a lot of time and money investigating those symptoms in the hope that the diabetes would turn out to be a red herring. It was a specialist at Great Ormond Street who finally helped me to put all the pieces of the jigsaw together. Unfortunately, the picture didn’t change. The original abdominal pain, a rash and the bloody stools she had experienced were symptoms of an unpronounceable virus called Henoch-Schönlein Purpura. The good news was that most kids recover without treatment. The bad news was that, in Velvet, the virus had triggered a genetic predisposition to type 1 diabetes.

The months that followed her diagnosis were a very steep learning curve. In normal people, blood sugar levels range between 4mml (millimoles per litre) and 7mml, but Velvet’s will often go below 2mml or above 25mml. Because she responds very dramatically to blood sugar changes, we can generally spot problems quite quickly. She can appear almost drunk when she is hyperglycaemic (has high blood sugar). She gets very giddy and she can’t sit still, or concentrate, until she has been given a correction dose of insulin. When she is hypoglycaemic (has low blood sugar) and her blood sugar drops under 3mml, she goes deathly white and lies on the floor unable to move, but as soon I get glucose into her in any form — tablet, gel or juice — she perks up in seconds.

Hypoglycaemia is more scary because it can happen very quickly and if her blood sugar dips while she is asleep, she could drift into a coma and die. That’s our biggest fear, so if she is running low we set alarms and test her through the night.

Understandably, fluctuating blood sugars are exhausting and Velvet gets very tired and grumpy, but without testing her, it’s hard to know what is the diabetes and what is an age-appropriate tantrum. We’ve had lots of scares, but many have turned out to be false alarms. One day, Velvet’s eyesight went blurry and I couldn’t get hold of anyone at the hospital. I was convinced that she was going blind, but after several frantic phone calls, my cousin’s friend who is a diabetes researcher telephoned me from Holland and explained in broken English that high blood sugar pulls fluid from the lenses of the eyes affecting the ability to focus, so when it happens, all she needs is a glass of water and more insulin.

It is not just me who has had to learn all this stuff. Because she isn’t yet old enough to do any of it herself, everyone who looks after Velvet has to know how to do blood tests, administer insulin and treat lows. The diabetes team at the hospital have trained her school teachers, and I have trained her big sisters, and my husband. I am enormously grateful for their collective support because effective diabetes management requires total vigilance.

Velvet’s blood sugar levels are tested a minimum of six times a day and she is injected with insulin every time she eats and again before she goes to sleep. The biggest change in her diet has been eliminating snacks. Her older sisters are constantly grazing, but all Velvet’s treats have to be planned in advance, which makes birthday parties a total pain. My mental maths has improved a lot because we have to count the number of carbohydrates in absolutely everything and then calculate her insulin dose accordingly. But it is an inherently problematic system. If she doesn’t finish a meal she can have a “hypo”, and if she eats more than I have allowed for she can go “hyper”. Despite what feels like continuous monitoring, our control is still very erratic.

It took a long time for Velvet to process what was happening. In the beginning, she would ask when she was going to get better and we’d dodge the question, but by the time she had that puppy, she understood that her diabetes was never going away. She rarely complains about her condition and she lives a relatively normal life, but limiting the impact on her can take its toll on us. Every Friday night, for example, I spend three hours sitting in my car so that Velvet can attend a dance, music and drama class with teachers who can’t accommodate her condition. I give her an injection when they stop for a snack and I’m on hand in case of emergency, but mostly I’m there so that she can be.

We’re now on a waiting list for an insulin pump, which should provide more stability and cut out the injections. I was initially averse to the idea because, although the injections are a hassle, at least her little body is still her own, whereas the pump has to be permanently attached. The device is about the size of a fat iPod and it dispenses a continual dose of insulin through a very fine plastic needle that is injected into her stomach. The pump sits in a little pouch that is worn around the waist and, although she can remove it to have a bath or a swim, she can’t be off it for more than two hours. It is the best technology available, but it is far from ideal.

Pump, or no pump, Velvet has a life of pricking and poking ahead. She is only seven, but the tips of her fingers are already pockmarked from blood tests and her body is constantly covered in little bruises from the injections. In the short term, we are desperate for a less invasive testing and insulin delivery system, but in the long term, we are obviously hoping that someone, somewhere, will find a cure. In the mean time, we can’t afford to contemplate negative outcomes. We keep positive, remain vigilant and teach Velvet that she can do anything that she wants to do in life. But in the early hours of the morning when she is hypoglycaemic and we are forcing glucose gel into her mouth, our greatest fear is that she will die before us.

On Monday 27 May, Suzi and her husband will run the BUPA London 10,000 to raise money for Diabetes UK. If you sponsor her, you will be donating to diabetes research and helping 21,000 kids in the UK who, like Velvet, have had their childhood compromised by type 1 diabetes. justgiving.com/suzi-godson

Diabetes: the facts

• According to the charity Diabetes UK, 3 million people are diagnosed with diabetes in the UK, and an estimated 850,000 people have the condition but do not know it.
• It is a condition where the amount of glucose in the blood is too high, because the pancreas does not produce enough insulin, the hormone that allows glucose to enter the body’s cells.
• There are two main types of diabetes. Type 1 diabetes develops when the insulin-producing cells in the body have been destroyed and the body is unable to produce any insulin. This may be triggered by a virus or other infection.
• It can develop at any age, but usually appears before the age of 40, and especially in childhood.
• Type 2 diabetes develops when the body can still make some insulin, but not enough, or when the insulin produced does not work properly (known as insulin resistance). It usually appears in people over the age of 40, though in South Asian and black people, who are at greater risk, it often appears from the age of 25. It is increasingly becoming more common in children, adolescents and young people of all ethnicities.
• Although diabetes cannot yet be cured, it can be managed with lifestyle changes such as healthy eating, increased exercise and medication.
• All those diagnosed with type 1 diabetes will require insulin, and eventually some people with type 2 diabetes will also find that their blood glucose levels remain too high and insulin treatment is recommended by their doctor.
• Insulin cannot be taken in tablet form, because, being a protein, it would be digested in the stomach before it had an effect. It is given via an injection, using a syringe, a pen device or via an insulin pump. The insulin is absorbed into blood vessels and arrives in the bloodstream.