Ad hoc

Well, let us get back to our efforts to get Emilie started on the insulin pump. As you might understand, the driving force was the knowledge we could gather by ourselves. The pump was not a suggestion made by our diabetes care providers. As a part of our ‘research’ we had – among other books – read the Swedish endocrinologist and child physician Ragnar Hanas’ excellent book ‘Insulin-dependent Diabetes in Children, Adolescents and Adults – How to become an expert on your own diabetes’ which also covers CSII.

But the book that became almost a ‘bible’ in our preparations for pump therapy was ‘Pumping Insulin – Everything You Need For Success With An Insulin Pump’ by John Walsh and Ruth Roberts. Systematically it guides the reader through every bit of the road towards successful pump therapy. From initial considerations via calculations of initial doses and start-up to very specialized chapters on elite sports, pregnancy and children.

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Since Emilie was diagnosed, our curiosity towards the mechanisms behind diabetes had gradually increased. What is really happening in the body of a person with diabetes? Does a better way to manage the disease not exist?

We have not made a record of the first time we found out about Continuous Subcutaneous Insulin Infusion (CSII) – or, for short, the pump. But in 1998, we know, we were surfing the internet for pump related information, because it was at the web site childrenwithdiabetes.com we first became aware of the device. From there we followed the links around the world.

Everything we read pointed to the same direction: It was, in fact, possible with the technology of the time to achieve a potentially better control of Emilie’s diabetes. And it would be possible at the same time to ensure her – and our family – a better quality of life.

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In the beginning, Emilie had one injection a day containing a mixture of fast acting and long acting insulin – later on she had injections both in the morning and in the evening. In spite of the fact that insulin had saved Emilie’s life, we daily felt the drawbacks of conventional insulin treatment.

One thing was the injections. We relatively quickly got over the period, where we had to struggle with Emilie (who was not even three years old at that time) to give her insulin. However, through the years Emilie got more problems with local reactions to the injections. She had big red marks after the injections and even though she is not a ‘chicken’, she often cried, when she was having insulin even at the age of eight just before she got an insulin pump.

Another problem was the action profile of the insulin used in the injection regime. The fast acting insulin was effective for eight hours – much longer that the food Emilie had for breakfast. It had it’s advantages because the injection in the morning could cover the lunch.

The drawback was that she had a relatively high level of insulin in the body between the meals.

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Emilie was two years and nine months old, when she was diagnosed with type 1 diabetes on the 1st of July 1996. She had started in kindergarten just before the summer holiday, and for a couple of weeks we had noticed, that she was very thirsty. She was still using diapers so even if we did not always see her drinking water, it was obvious that she did drink a lot …

We had been reading the household books of health and medicine and even checked an encyclopaedia. Therefore, we had an idea of what it could be – but, of course, it was not …

So, on the first day of the summer holiday, we happily went to Tivoli gardens in Copenhagen after having dropped off the urine sample that our doctor had asked for – “just for safety’s sake”. And in all our ignorance, we quenched Emilie’s unquenchable thirst with orange juice and milk all day …

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Of course, that is not entirely true … Using an insulin pump to treat
type 1 diabetes is not like “not having diabetes anymore”.

But then, why use the sentence as the headline of the first post on this blog?

Because, when our daughter had been using this device – the insulin pump – for about a year out of the seven years she had been having diabetes at that time, one of her best friends said so, when they were playing together one afternoon:

“It’s almost, as if Emilie doesn’t have diabetes anymore …”.

In all their spontaneity, those words made my wife and I reflect ourselves. The pump had not come easily – we had been through a bit of a fight with our hospital to get it and we were very determined to make our ‘new life’ work out well.

However, if we are asked to stop ourselves and put words on this new life – how will we judge ‘life on a pump’, then?

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