There can be few more heart wrenching words than when your child turns to you, their face impossibly blotchy red and tear stained, and plead "But Daddy, why me? Why not someone else? What did I do to deserve this?" I felt helpless and gutted. Not gutted in the way that you feel if your team is thrashed, or you failed to achieve a personal goal in some way, but like someone took a serrated blade to your stomach and pulled out your intestines with their hands.
It was 10.30am on 23rd December and my daughter Alice had just been diagnosed with Type 1 diabetes. Admittedly it was not something else - worse, like a terminal illness, but also it was not something like a broken arm which could be fixed with a plaster cast for 6 weeks and then life would continue as normal. Diabetes in both forms - Type 1 or Type 2 - is completely manageable assuming you want to manage it, and there is always the possibility of a cure in 5 or 10 years' time, but our lives will never be normal in the old sense, again. Especially for Alice, who is now saddled with endless blood tests, carb counting and at least 4 insulin injections a day for the rest of her life. If I could take the condition away from Alice to have it myself I would do so in a heartbeat.
It has been two weeks since the diagnosis, and it could not have come at a worse possible time - Christmas. Long, drawn out meals at odd times of the day and night coupled with all the sweets, chocolates, mince pies and Christmas Pudding have meant spiking blood sugar levels and for a family that is trying to get the blood sugar levels down to a stable range this has meant testing blood sugar levels at 1am and then 6am as well as every 2 hours during waking hours. Going back to school has also been one of the most stressful experiences of my life. Alice was terrified that everyone would look at her differently - stigmatize her for having special privileges such as being able to eat in class (where necessary) and for having to inject. In the event, Day 1 went quite well, and although Alice's condition is not yet common knowledge amongst her peers, her blood control was good and she met another Type 1 girl 18 months older than Alice, and that has proved infinitely more beneficial than chatting to her grandparents - two of which are Type 2.
Alice loves her food - it has not always been the case, as she was quite a sickly baby and then hated the first 2 schools she went to, frequently vomiting on arrival. Music, sport and food has become her salvation. She plans her meals and snacks religiously to fit in with her extensive extra curricular activities, and often bakes cakes to sell for extra pocket money, sampling her wares of course! She loves trying different types of food from all around the world- curry, snails and sushi being some of her current favourites
Type 1 diabetes is where the Pancreas stops making insulin. There is no current scientific conclusion as to why this occurs - it is in no way related to diet, obesity or lifestyle (not that Alice should have been worried as she leads a very active lifestyle and eats very healthily anyway). In fact, the latest theories couple some unexplained Genetics (although there is no history of Type 1 in either my or my wife's family) with a viral trigger, as Diabetes Type 1 occurs in clusters - basically some sort of infection. Diabetes Type 1 is more often than not diagnosed in children - often between the ages of 11-14, although instances have occurred in much younger children and adults too. In contrast, Type 2 Diabetes is intrinsically linked with diet and exercise, as well as obesity, and is far more common in adults. It is often called Mature Onset Diabetes, and it is where the body becomes resistant to insulin and this needs to be augmented. Type 2 diabetes can often be controlled through diet and pills, whereas Type 1 can only be controlled through insulin injections, as the insulin would be broken down by the acid in the stomach.
The symptoms of both types of Diabetes can often be similar - unexplained weight loss, thirst, passing urine more frequently, extreme tiredness and genital itching or regular episodes of thrush. However, the symptoms presented in Type 1 Diabetes tend to occur rapidly.
We noticed several symptoms towards the end of the summer, and especially since restarting School in September, Alice had noticeably lost weight. At her age this can be put down to a growth spurt, as well as increased levels of physical activity given she has risen up through the ranks in Diving - her chosen sport. She had also had several yeast infections, but was not noticeably more thirsty - at least to her parents, and as such was not passing urine as frequently as all that (with four girls in the house someone always seems to occupy a bathroom / loo somewhere). She had visited the local GP who commented on the weight loss but was not overly concerned. When we arrived with my wife's parents in Yorkshire, we observed the usual family practise of using his blood sugar monitor to test the whole family. My father in law has been Type 2 diabetic for some time. Everyone came in with a blood sugar level of between 5 mmol/l and 6 mmol/l, and Alice's was so high that the reading was just "High". After 12 hours of just water, Alice was still 19. We went straight to the York District Hospital Pediatric Ward, and within what seemed like a few seconds, our lives had changed forever.
The ramifications of this diagnosis have been varied. There are the obvious ones such as carb counting (something which can annoy all the family especially Alice, although we also find quite fascinating and enjoy the maths behind it). There is the decision - for Alice - to eat what she wants and just increase the insulin dose (the higher the dose, the more the discomfort or even pain of the injection), or to eat fewer carbs and inject less insulin although for Alice perhaps enjoy her food less. She absolutely adores fresh white bread. There are also other ramifications - Alice wants to be normal, and does not want to be labelled as different or even disabled. She is worried about telling people in case she is accused of having caused the condition herself, and being bullied for having a sweet tooth or perhaps greedy - even though we and she understand that this is nonsense. She is worried about the teachers in her school not allowing her to test in class if she feels a bit woozy, and perhaps eating in front of the others. Theft of the equipment. Having a hypo in class and being teased for it - perhaps being labeled insane....the list goes on. And of course, as her parents, we take these worries on board. One of the toughest issues to deal with currently, is trying to persuade an 11 year old girl that she needs to plan what she eats beforehand - the insulin takes 20 minutes to work, so injecting just before a meal is optimal. Weighing out exactly what she is going to eat, measuring the carb content, and then injecting the commensurate level of insulin, and then all of a sudden she changes her mind, fancies something else entirely and has a meltdown. She is after all only 11.
We are currently trying to get enrolled in the French / Monaco system, although have not yet met anyone else in Monaco with Type 1 diabetes (even though Alice has). I am sure there will be some, and it would be great for Alice to meet them to discuss her fears and know that someone else has blazed a trail already, and that she is not alone. We have also applied for a couple of British events - for families and a sort of Diabetic Outward Bound holiday for Alice, in order that she can be educated and that she realises that she is not alone and can in fact lead a normal life as long as the condition is managed.
Since Christmas has effectively come to a close, and we are now back home, we are making far greater progress in controlling her blood sugar. We have been told to target a range of between 4 and 8. Below 4, and she risks a hypoglyceamic episode. These were explained to us in three stages. The first is a mild attack - perhaps fatigue, going pale, tingling lips, inability to think rationally, stroppyness (she is an 11 year old girl - this is perhaps not so much a symptom of a hypo more a normal state of affairs). A moderate version might be all of the previous symptoms, but coupled with extreme drowsiness and even inability to swallow. The third and most severe level of hypo - defcon 5 - is unconsciousness, seizures and eventually coma. It is therefore important to monitor blood sugar levels versus the amount of insulin injected in order to avoid the hypo episodes, and to treat as early as possible. In some cases, this may no longer be possible to self treat, and the diabetic may rely on those around her to help - perhaps administer some lucozade (not Isotonic as this is too slow acting) or emergency dextrose liquid that she carries around with her now.
At the other end of the scale is Hyperglycaemia - this is where the blood sugar level is above 8 for a sustained period of time. The symptoms are thirst, peeing more frequently, headaches and tiredness. If Hyperglycaemia is not treated, then ketones can build up in the blood causing Diabetic Ketoacidosis. This is where the body uses the fatty acids and proteins in the muscles, and is often the first symptom of untreated diabetes, although if untreated can cause life threatening complications. Vomiting, deep breathing, confusion, and occasionally coma are all symptoms.
Diabetes is manageable and it is of course necessary to manage it. There are plenty of examples of Type 1 Diabetics that have led healthy and successful lives, with top flight sportsmen and women competing and winning at the highest level. At the moment we are just trying to get on top of the condition and to get the glucose levels within the target range. The phrase one day at a time rings very true. In time, I am sure we will learn to live with the condition and to lead a normal life. Life will never be the same, and I still don't know the answer to "But Daddy, why me?"