Tonight:
5°c
"Mum upset". I could see the words clearly over the shoulder of the A&E paediatric doctor as he read through our GP's report. I suppose that meant me. It had been just three hours since our four-year-old son had been diagnosed with Type 1 diabetes. He'd been losing weight and was thirsty all the time but when I went to get him checked out, our GP had dismissed my fears of a diabetes diagnosis: "Oh, he's too young for that."
But then came that hear-your-heartbeat silence that precedes bad news. Dr Rahman had his back to me and kept looking down at the test strip, which measures the ketone levels in the body and is a clear indicator of diabetes. "Um, yes, well, you may be right," he said finally. When he turned round, I probably did look upset. It was Monday, 5 January 2009, the day our old way of life ended.
From the surgery, we were sent straight to St Mary's, Paddington, where Joe's blood sugar levels read 36.6. Yours or mine would average five or six. He appeared fine, if somewhat bemused, but that's the problem with diabetes. It's a pernicious disease, dressed up to look manageable. In truth, it can blind, cripple and leave sufferers prone to heart disease and in children has inexplicably increased fourfold in the past 20 years.
Joe had the first of what will be a lifetime of four daily insulin injections - plus at least four daily blood tests squeezed from his fingertips - and I stared out of the sixth-floor window of the Great Western children's ward and wondered how we came to be here.
In the preceding weeks, something had triggered Joe's body to attack healthy insulin - producing cells in his pancreas - the beta cells in the islets of Langerhans. The pancreas is a major organ the size of your hand but the islets, which do the massive job of allowing carbohydrates and sugar to become useable glucose, are tiny. Joe's were dead or dying. From now on, it was up to us to play the role of a million cells that collectively weighed less than two grams. And what a heavy-handed job we were to make of it over the coming months.
We left St Mary's 24-hours later, after a crash course in managing diabetes by a fantastic team, headed by specialist Dr Wassouf, who all called me "mum" and explained-things-very-slowly. Armed with three different types of insulin, needles, injection pens and a sharps bin, we set about our task.
The lexicon of family life changes with a chronic illness. Names that meant nothing just days before - Lantus, Novorapid, Novomix - and even numbers - 2.8 (too low), 18.5 (yikes, way too high) and 5.8 (beautiful) - all blood sugar levels to be logged daily in a book - become part of your everyday language. The various insulins filled a section of our fridge and two plastic drawers full of diabetic kit appeared on the kitchen work surface.
It took six days for the initial shock to register. That Sunday night, if Dr Rahman had seen me, he would have reported "Mum catatonic". I realised life would never again be totally carefree, for Joe or us.
I don't know what he made of it all in the beginning. He was barely four and would put his fingers in his ears when I tried to explain why we had to stick needles into him. Then one night, soon after he was diagnosed, he was in our bed when he said quite clearly, in his sleep: "My body's not well." A few moments later he murmured those same four words again.
I think about them often, and wonder what's really going on underneath those blond curls.
We try to keep his body well by balancing his blood sugar levels between four and eight. In the routine of a school week, it's achievable. During weekends and holidays, it's like playing that game of threading a loop over a tangle of electrified metal wire - nigh-on impossible. Exercise, parties, growth spurts, one breadstick too many, the heat, a mild cold - they all have a bearing on blood sugar. Sweets and sugary food have largely been banished. But maybe I've gone too far - this week he whispered, "Mum?" "Yes." "For Christmas..." "Yes?" "Can you bake some muffins?"
The reality is when he is high - hyperglycemic - he can be loud and aggressive, and when he's very low - hypoglycemic - he becomes tired, teary, dizzy and headachy. It is like living with two Joes - the funny, all-singing, all-dancing Joe, and the rather scary diabetic Joe. Luckily, he never seems to remember transmogrifying into the latter.
I awoke recently at 2am to a familiar-sounding hyperglycemic cry that became shouts of "go away" as I came into his room. Books were thrown, the blood test kit was knocked from my hand and went flying over his brother's bed. An hour of this ensued before one unit of insulin restored the peace.
Come morning, he poked his head round my door and said, "Mum, I dreamt Hannah Montana came to our house last night and SANG!" I recalled we'd had a visitation from Chucky.
To be avoided at all costs is a hypo or hyper in earshot of the public. Last Saturday afternoon, 40 minutes of Joe's screaming attracted a complete stranger from down the road to our doorstep, while a hyper-attack en route to Florida had the lesbian couple in front of us hiss: "Your child's an animal!"
I don't expect people to understand. To them he looks like a tantrum child. In truth, he's just a little boy struggling to come to terms with being very different from everyone else he sees around him. He recently confided in his older brother George that he was the "only boy in the world" with diabetes. At least he's optimistic about the future, however naive. On the way to the park one day he said: "When I'm five..." He put his hand up and spread his fingers out. "When I'm five, I'm going to take the blood tests and zappers (injections) back to the doctors. When I'm five." He looked at me with those big eyes and said again, nodding his head: "When I'm five." He must have caught the look on my face because he quickly said: "I don't mind blood tests and zappers... but when I'm five..." His voice trailed off.
As things stand today, he will never be able to hand his blood tests and zappers back, though much is being done to find a cure, spearheaded by a brilliant charity called the Juvenile Diabetes Research Foundation. And it is this search for a cure that has provided us with an undiminished feelgood factor, despite Joe's illness.
It started in June when people began giving us money. Lots of money. My husband, John, had decided to swim the Channel (which he did successfully in a relay a few weeks ago) and I'd been asked to be an "ambassador" for the JDRF's fundraising run on 11 October. In a bid to raise up to £500,000 for research, I was asked to get as many of my friends and family to either sponsor me or trek east to Greenwich Park to take part in the day. The request was sent out late one Sunday night and four minutes later, I got my first reply. Charlotte. Lovely girl, four children, she understood. "We'll be there." To date there are 46 people signed up for Joe's Team who will join an estimated 2,000 on the day. What's more there's a sizeable amount of cash in the kitty, thanks to family, friends, work colleagues and an unexpected £20,000 donation from a philanthropic couple we see maybe once a year.
Diabetes is a long way from being the worst thing that can happen to a child. It's not a death sentence but it is a life sentence, unless one of those clever scientist gets enough money to come up with a cure. I'd settle for an artificial pancreas, something Dr Roman Hovorka at the University of Cambridge is trying to perfect. It's something I fantasise over.
I don't know how Joe will cope over his lifetime but by seven he should be doing the injections himself. Leo Rifkind, the inspiring 17-year-old chair of the JDRF run, assures me that after a while "it just becomes normal, like brushing your teeth". We're not there yet - bad enough getting my lot to brush their teeth at all, never mind chasing Joe round the room to give him his final and most painful injection before bed. He yelps like an injured puppy.
To cope, I took up running back in January - it helps assuage that 5.30am adrenaline burst of anguish and might get me up those Greenwich hills come 11 October. I've lost five pounds but don't feel any lighter. It was the BBC's Justin Webb, whose child was diagnosed about the same time as Joe, who said the experience makes you sadder and wiser. Certainly we've all learned a lot, not least how great the NHS can be, and how children accept illness with such little complaint.
Life's annoyances - parking tickets, flaky people, pension deficits - no longer matter. So long as John and our two other children are healthy, and Joe's sugar levels are below 10, then I've had a good day. Mum happy.
To help find a cure for children like Joe, join the JDRF Walk/Run to Cure Diabetes 2009, Sunday 11 October, Greenwich Park. To register for free bus transport bus from outside Lord's Cricket Ground, go to www.jdrf.org.uk/walklondon
10 km run starts 10.30am, walk 11am. Live music, hot food, kids' entertainment all day. www.justgiving.com/jackieoffenbach
Reader views (13)
I am sitting in a childrens ward with my six year old who has just been diagnosed with sugar levels of 21. I found this article while doing a desperate scramble for information. What lies ahead is daunting but it is reassuring to know that others manage it so well.
- Suzi godson, London, 04/01/2012 12:25
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Dear Jackie,
We have a faulty gene in the paternal side of our family, which has resulted in one child per generation being diagnosed with Type 1 diabetes.
The good news is that my aunt, who was diagnosed as a teenager in the 1950's, has recently celebrated her 70th birthday. Her niece is now over 50, & the niece's nephew is in his twenties. Despite all 3 living very different lives,and not all highly disciplined, I am very pleased to be able to tell you that none has had gangrene or gone blind, or had to fight any of the other 'disaster scenarios'
We have no way of knowing how far back it was that this gene first emerged in our family. The plain truth is that before my aunt's generation, the condition was neither identified nor treatable.
I know that can't be a huge comfort when you are struggling to come to terms with such a huge change in yours & your son's life, but my family's experience confirms that, for each generation, the treatment becomes easier & more effective, and that there is no reason at all why he should not live just as full & long a life as you & the rest of his family.
Good Luck,
Carol
- Carol Fisher, Kingston Surrey, 16/12/2009 13:49
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jackie,
You're looking at the injections the wrong way: they are not what make him different they are what let him be normal. I am afraid that not too many years ago your son would have been doomed to an early death. Today he can look forward to a relatively normal life albeit with some tedious injections, blood tests and so on. Gary Mabbut (I think) was a diabetic footballer who played for Spurs and England.
Try giving the hyperdemic a friendly nickname; try making the time when you do the tests/injections his 'special' time. This isn't easy, particularly with a 4 year old, but it will get easier as he gets older and can start to manage his diabetes himself.
- Bill, Bucks, 02/10/2009 11:37
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Both my 36 year old son and my 10 year old grandson have type 1 diabetes. Things have improved so much since my son was diagnosed. My grandson has had it for a year and like your son is being looked after by St Mary's,Paddington. Although it was an awful shock when tmy grandson was diagnosed I feel we have been so lucky to be under the care of the wonderful diabetic nurse,Jan, at St Mary's. Under her guidance he has been away with the school for a week(of course the teachers were primed up)But then he had a successful trip with a commercial holidays for children organisation which he thoroughly enjoyed and only had one hypo which he dealt with himself but ,of course, they rang and informed us. He continues to have sleep overs at friends and leads a normal as possible life. The downside is that you cannot be spontaneous. If after scool plans change someonr hss to run down with the gear. The school has been amazing particularly the ladies in the office who supervise his lunchtime injection. But for children who may have it and it hasn't been diagnosed even before the signs such as thirst we noticed that he was very tired in the afternoons:the teacher even wondered if he was going to bedlate. In fact it was almost a relief to find out the reason as I felt very protective towards his parent who was possibly being criticised.
- Miranda Carrington, london, 01/10/2009 21:52
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I am just so pleased that there is more publicity about the changes that having a child with diabetes causes not only for the child, but also the family. It is one of those things that people do not see, so do not understand the problems involved, while life does gets better as they get older it never goes away. Good luck with the fundraising, what we need is a cure and that means as much support for JDRF as possible.
- Sally Scott, West Sussex, 01/10/2009 15:09
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Two friends of mine (both pensioners) are type 1 diabetics and are in fact healthier than average because their condition has obliged them to live very carefully.
- Dectora, London UK, 01/10/2009 11:14
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It hits a nerve every time you read an inspiring article like this. My daughter was misdiagnosed in May this year inspite of me telling my GP my observations. She ended up in a high dependancy unit for 6 days with fear and concerns of neurological problems.
This is our new normal, and we have an incredible diabetic support team in Cornwall but no plans for a Pump service for possibly 2 years! I miss spontaneity and now I also find a good day is keeping sugars under 10. How life has changed!
I wish you luck in your fund raising as we begin our own charity night in the form of an aerobathon on 16th October. On the positive side as a personal trainer and owner of a fitness business I am able to raise health awareness and educate people of Maddie's diabetes. This monster is no longer in front of us blocking our daily living, he has moved to Maddies left side and sits there for most of the time allowing her to get on with being healthy and a fun loving child.
- Helen Tite, Helston Cornwall, 30/09/2009 22:42
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Thankyou for writing this piece Jackie. Our story is very similar, though Tess was 17 months at diagnosis. She had an unquenchable thirst and had been drinking from the paddling pool on her hands and knees prior to me taking her to the GP. I was turned away by our GP, told she "was too young" to get Diabetes, despite me googling her symptoms and Diabetes flashing up each time. By the time she presented in A and E at Barnet and Chase Farm hospital she was drowsy and slipping into DKA, her BG was in the high 30's. Tess now attends UCLH and pumps Medtronic with continuous sensors, we have our little girl back again and now rarely have to deal with the split personalities related to hypo and hypers you describe so well. She is now 3 and a half and is happy,boisterous, clever little girl. I think there will be a closed loop system soon.....for all our brilliant children we need a cure.
We too did the Greenwich walk last year, it was a memorable day. Good luck to you all and best wishes to you, Joe and the rest of your family.
- Anna Hunter, London, UK, 30/09/2009 19:47
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I could be reading my daughters story as my grandaughter was diagnosed when she was 6, they are doing a brilliant job of handling the situation, but life has changed so much carb counting dealing with tantrums when she decides enoughs enough and as stated in this story the looks from strangers when shes hyper and throwing a strop. Our little princess is so brave & caring for others, I recently had an operation and had to have daily injections for a month, she said don't worry grandma its easy I'll show you how do do it so it wont hurt to much. I just want to wish Joe Jackie & the rest of their family good luck
- Sue Connelly, Liverpool, 30/09/2009 15:51
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My 9 year old daughter had her first insulin injection at 5 weeks old. We have been through most of the regimes available and finally, due to the appalling system that is called the postcode lottery we have an insulin pump. It is the closest thing to a normal pancreas but by no means is magic, but is definitely the way to go. Jackie, I too am a JDRF supporter but I am also part of the UK Children with Diabetes Advocacy Group www.childrenwithdiabetesuk.org we are fast getting a name for ourselves in the paediatric diabetes world. We are working for pumps for all areas, better care in schools, some are abysmal, better care in hospitals, again some are abysmal. But most importantly we support each other. I have over 300 friends now with childhood diabetes in their lives. We all understand. I couldn't be without them now. Take a look at the website, anyone who has a child with diabetes.
I wish you and Joe and your family well, life is hard with diabetes but its what you make it and my daughter and I have a lot of fun.
- Adrienne Burton, Bexhill-on-Sea, 30/09/2009 14:52
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HI Jackie and you Joe, I have my own Joe, who was diagnosed when he was 8 in 2005 and my own Tom, who was diagnosed when he was 18 months old in 2000. Tom was over 60mmol when he was misdiagnosed by several GPs. I diagnosed Joe and he remained as healthy as one can when life is turned upside down - again!
Oh I hear myself in your words, and lots of other mums and dads and kids living that new life that comes with this disease in the family. My Joe and Tom are now nearly 13 and 10 years old. Life has carried on and they are happy and healthy. I wanted to make sure you knew about insulin pumps - even though sometimes knowing isn't enough. Both my boys have Medtronic pumps and use Continous Glucose Monitoring Sensors all the time to help me get their levels where they should be. Diabetes got so much smaller when we got their pumps; its still their in our lives obviously, but they get to choose to ignore it for longer and live more like they would have done without diabetes. Look on-line about them and get to meet kids who use one. It may just change all of your lives again, for the better.
- Jacqui Double, Kent, UK, 30/09/2009 14:01
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This brought a tear to my eye..and memories of my own son's diagnosis. Good luck with the fundraising. : )
- Danni, Bath UK, 30/09/2009 13:07
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My son was only 18 months old when diagnosed with diabetes. Imagine sticking a needle into a baby 3 times a day, and not being able to explain why you are hurting him.
Andrew is now 22 years old, and is living a healthy, normal life. He manages his condition brilliantly and is an example to us all. So, Joe and Jackie you now have a new and different life before you, it will be tough at times but as you stated it's not the end of the world by any means. As long as Joe always takes his diabetes serously, and manages his blood sugar correctly he will live a happy, normal life for many years. Good luck.
- Mark Burton, St Ives. Cambs, 30/09/2009 12:28
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