Happy Birthday, diabetes – by Olly Double

It’s almost ten years to the day since my younger son, Tom, was diagnosed with diabetes. It’s a long time ago, and yet the events surrounding it are still etched starkly in my memory.

He was well under two when he started getting ill. He was guzzling water like there was no tomorrow and peeing so frequently that his nappies bulged unfeasibly. The weight fell off him, his face eventually getting that skull-like tightness you see in photos of famine victims. Then he started getting diarrhoea and vomiting. Jacqui had a look in a book of childhood illnesses and the chart she found fitted his symptoms perfectly – diabetes. However, due to a series of cock-ups that we never finally got to the bottom of, he was misdiagnosed as having gastroenteritis.

This was sort of a relief, except that he kept getting thinner and his symptoms kept getting worse. Jacqui consulted doctor after doctor, and became aware that she was being seen as a paranoid parent. It was only her bloody-minded determination that eventually got yet another doctor to eventually come out and see him. When this latest doctor gave Tom a finger prick test, his blood sugar was so high that it went off the scale and later, when it was properly tested in hospital, it was over 60 mmol/L. He was so skinny and wretched by this point that the medics found it impossible to get into his veins to start rehydrating him, and had to go into his jugular.

Initially, he responded well to the treatment, but I remember how confused and depressed I felt about the whole thing when we were told he had diabetes. I had all the questions in my head that people who don’t have to deal with diabetes – let’s call them civilians – always come out with. Was it bad diabetes? Would he grow out of it? The answers to these being, respectively, ‘there’s no other kind’ and ‘no’.

Then there were complications and things changed for the worse, largely because he it had taken so long for him to be diagnosed and start being treated. If only one of the doctors who had seen him had bothered to do a finger prick test or test his urine for glucose, this could have been avoided. I don’t want to revisit this part of the story at this point, but suffice it to say that we were very close to losing Tom and he had to be taken to Guy’s Hospital by a retrieval team in the middle of the night.

Once he was out of the woods and starting to get a bit better, we took him home with us. In many ways it was like having a newborn again. We couldn’t leave the house without tons of equipment, and we had to kiss goodbye to having a good night’s sleep. He was on mixed insulins for the first few years. I know a few people seem to manage to use these and get good blood sugar levels, but Tom’s were all over the place for the whole of his early childhood. The body is a complex system, and the way it produces insulin to match food, exercise and mood is miraculous and extremely complicated. Trying to replicate that with two injections of insulin a day is a bit like trying to type with boxing gloves on. It’s really difficult – look what happens if you try it:

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Add to that the fact that his night time dosage was initially far more than he needed, and you’ll see why we found ourselves sitting up with him at 2am trying to coax him into eating an enormous bowl of Cheerios. And all of this in the build-up to Christmas.

Things have changed a lot since then. The technology gets better all the time, and his blood sugar control improved massively when he went on to an insulin pump in 2008. Using a pump is like trying to type with surgical gloves on – still harder than typing normally, but a hell of a lot better than trying to do it in boxing gloves.

Every year at around this time, we tend to crack open a bottle of sparkling wine to toast the fact that Tom’s still with us, and the fact that we’ve been able to watch him grow into the happy, confident, and delightfully eccentric boy he now is. We did that this weekend, and as it’s the tenth anniversary, we’ll probably do the same again next weekend.

Happy birthday, diabetes.

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Very moving. Sadly Tom is not the only one who has been failed by the people we trust most to get it right. So sad that each year there are still children who are turned away by doctors and hospitals when a child is obviously very ill because a simple test quick test wasnt carried out.

Crack open another bottle of that sparkling wine to celebrate the sucessful years of living well with diabetes. Have a good weekend

Wow how awful just cried my way through that. My son just reached 2yrs with Diabetes and think I am only just grieving as we had so much to cope with at the time and since.
My son had to leave school because of ignorance and pure laziness of teaching staff and after fighting for his rights for a year we were all worn to a frazzel or more like breaking point.
Congratulations on 10 years and to all our survivers.

Really appreciate your blogs Olly, they make me feel we’re not the only family going through this. Happy “10th birthday” to you and yours. Keep up the blogs.

It’s stories like this that make me so much more determind to make sure my diabetes doesn’t rule my life, but to also make sure people dont have to live through experiences ive had and experiences you have had.
Your boy is strong! Remember you are also strong, helping everyday your son manage diabetes.

Those diagnosis days really do stay with you. My 14 year old son was diagnosed in April of 2003 soon before his eighth birthday, and my 11 year old daughter was diagnosed in March this year, when I sat in the doctor’s surgeryand wept for the second time when my worst fears were confirmed-again. Everyone presumed that we’d be fine second time around because we had so much experience already, and in some ways this was true. However, my daughter’s diabetes is hers, and my son’s is his, two individuals, with individual needs.
We had a similar experience with the ‘Mixtard’ insulin and struggled with it for years before transferring to 4//5/6 inections per day, and better control.

This was so moving – congratulations to you, your family and of course, your son. I am really happy to hear that he is doing well after all this time. I was diagnosed when I was 7 and had similar issues with two daily injections as your son, and like him, I now use an insulin pump. I loved your analogy about boxing gloves and intend to use it the next time I need to explain how complex diabetes really is. So many people think that if you test your sugars and take your insulin you’re fine, and that the only way complications develop is if you skip doing those things. That’s so far from the truth that it’s laughable! In March it will be my 16th anniversary…sweet 16 or what? :P Congratulations again to your son. I’m sure with your help, he will have all the support he needs for now and in the future :)

Must of been horrible to go thru all that but glad it all worked out for the best in the end
I took my 2 1/2 year old son to doctors to be tested this mornin as he is drinking like a fish and is sleepin 15-20 hours a day and this ain’t right for a 2 1/2 year old he was really ill last oct lost tons of weight been sick havin the runs non stop for about a year said it was a bug then gastricinterist but still no beta but has put weight back on slowly after a very very strict diet in a way I want it to come back negitive but and the other I just want to get him sorted

OMG is all I can say. My son celebrates his diabetic birthday also in December. Its been 3 years now and the symtons described above are the same as my son. The doctors never checked his blood until it was too late. I keep insisting that it was something else but was told lots of bugs about and he had one best to treat as a viral infection. My son now has the pump and is the only child in our clinic to get it . The reason because he has now been diagnoised with Coleiac disease another complication of Diabetes. We are still doing night time checks and on red alert for ketones at all times. Its hard but I still have my beautiful son who is an inspiration to everyone he never lets this get him down and he soliders on. He is NI Karate Champion and I am the proudest mum ever.

So sorry to hear you had such a trauma with diagnosis. I like your analogy of using boxing gloves to type. Unfortunately, not only is is “civilians” that are in the dark about diabetes, but also medics. Some think that if you do what it says in all the text books then you should have a perfectly normal blood glucose levels. It took me about twenty five years to find other Type 1s to share experiences with, and it was only then, that I realised that I was “normal” in not being “normal” (as defined by the medics and text books).
Enjoy your celebrations.

Very moving, i have tears in my eyes reading this as it very similar and reminds me so much of my son’s diagnosis over 7 years ago. It is also fightening to know that this misdiagnosis is still happening to other children today.

I hope you enjoyed your wine, have a lovely weekend.