Ad hoc

My intention with this series of posts on pump therapy as we have experienced it in our family, has been to give as realistic an impression of the therapy as possible and to share the experiences we have made ‘on the floor’. Experiences that others, hopefully, can benefit from - or share their disagreement with …

I might have put a lot of emphasis on problems and challenges, that other pump users may find diminutive, but in my opinion these issues are important to be aware of, when considering pump therapy.

Besides, if you are going to write a little more than a page about life with an insulin pump you have to go into details about challenges and problems as well as benefits.

Because all of the benefits and positive effects of pump therapy can be put in few words:

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A few words about the actual pump, Emilie has been using: A D-Tron Plus from Disetronic - or, rather, Accu-Chek, which is the brand name after Roche’s acquisition of Disetronic’s pump business in 2003.

The pump was easy to learn, also for Emilie – easier than we had expected. The functionality has to be described as basic as compared to the newest pumps on the market, but actually, we have only been missing one thing: The ability to give an ordinary bolus while the pump is giving an extended bolus.

That would be very useful when Emilie wanted to eat some fruit or dessert after having started an extended bolus to for instance a pasta or pizza meal. The extended bolus itself has been very useful, because when you are using only rapid acting analog insulin, it really shows that some types of food are very slowly digested in the body.

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Skin reactions, too, was a concern in the beginning. We had read, that it could be a good idea to apply some kind of coating to the skin before inserting the needle, in order to protect the skin from the adhesive and to improve the adhesion. In our case, we used the product Skin-Prep – and unfortunately, it did no good. The adhesion of the needle was not as good as without Skin-Prep, and Emilie’s skin did not like the substance. So we stopped using it.

However, Emilie’s skin did not like the white adhesive of the needle itself, either. After some time her skin showed heavy reactions to the adhesive – irritation that almost resembled light burns. Again, we had to feel our way and today we do as follows:

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One problem, which posed a bit of a challenge during Emilie’s first year of pumping was infections at the infusion site. In total, Emilie has had around five of those, of which two had to be treated with antibiotics.The most common cause in our opinion had to do with swimming – even though we disconnected the pump in those situations and covered the needle with a self-adhesive waterproof Tegaderm film. In some cases, the film did not stick to Emilie’s skin so the water got in. In other cases – well, we just do not know.

We were very careful to follow every procedure that we had been taught when changing the infusion set: Washing hands several times, disinfecting the infusion site, not breathing at anything and so on. But nevertheless, we had those nasty and painful infections. Why?

Well, we do not know for sure, but one thing we know: We have not had a single infection since changing two things:

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Our evaluation after the first couple of months on the pump was, that daily life had almost immediately become easier. Emilie’s initial focus on the needle disappeared after a week or so, she quickly became accustomed to taking her boluses herself – with our guidance – and she did not feel restrained by the device that she had to carry along all the time.

So we were optimistic about the first HbA1c that Emilie had taken after two months with the pump. And we were deeply disappointed: 7,7%, it said …

7,7! That was 0,3 point up from the last HbA1c before the pump. That was not the intention and we were somewhat depressed by this result. Our endocrinologist offered monthly HbA1c-tests to monitor the progress and we continued tuning the basal rate and learning this new way of doing things. And, to our great relief, our efforts paid off.

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We set out with a flat basal rate of 0,5 U/h and made adjustments from there. After a few months, we had a basal profile with four different rates in 24 hours that worked quite well.Since then, naturally we have been adjusting the basal profile from time to time. But the ability to adjust the basal profile relatively has been one of the greatest features of the pump. One of the reasons, by the way, that we preferred the Disetronic pump in the first place, because this feature was not common at that time.

For one thing, you can reduce the basal rate to 80 percent for a few hours of sports. Or raise it to 120 percent on a foggy day with lots of reading and watching television and no physical activity. But we have had equally use of the relative basal rate in connection with Emilie’s growth spurts or long periods of hot summer weather.

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Of course, it was not easy from day one. Predictable calculation of bolus insulin only applies when the basal rate of the pump is set correctly. Until that you are still in a situation where the basal insulin might influence in a way you do not want. Therefore, the big task in the beginning is to isolate things.

During our diabetes ‘career’ until now, we had been taught that slow acting carbohydrates were the best thing. Not only with regard to general health, but in order to adapt to the injected insulin. Now we had to reconsider that. We had to realize, that pasta and rice, for instance, are hard to handle in the beginning of ‘life on pump’. They influence the blood glucose for so many hours that it might be difficult to tell whether high blood glucose five hours after a meal is the result of too little insulin for the pasta or a basal rate that is set too low.

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February 18th 2002 we turned up at the County hospital in Glostrup, Copenhagen. We had arranged to have some days off both of us, and our son Tobias had a short vacation at his grand parents’. Emilie was to be in hospital for a couple of days in order to be in close contact with the diabetes nurses and endocrinologist. Moreover, a nurse would measure Emilie’s blood glucose during the night. Disetronic showed up with an experienced pump nurse to give some advice help for the first couple of hours and ‘our’ endocrinologist was very dedicated to ensuring our success.

Emilie was fasting and had not taken any insulin in the morning so we were in a bit of a hurry to ‘get connected’. The nurse helped us to get it right and told us about her own experiences with different types of needles.

The needle was something that would be very present during the first couple of days. The Tender needle was much better for Emilie than the Rapid, but Emilie had extreme focus on the needle. She talked about it most of the time and told us whenever she could feel it a little bit when bending over or lying on her stomach. We had asked her to tell us, because we could not feel the needle in her stomach so she had to tell us how it felt. And so she did …
After years and years of preparations, talk and trying to persuade the health system, Emilie was now wearing a ‘live’ insulin pump.

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In the beginning of 2002, things were finally falling into place. We had the pump and had meetings with our endocrinologist about the start up. She is a highly qualified diabetes expert but Emilie was to be her first patient using an insulin pump.

As mentioned above, we had done some of the homework ourselves working with the book ‘Pumping Insulin …’. Being an American book, of course everything was in American units so we had been translating the essential chapters and converting some of the tables and formulas into a spreadsheet with European units. We wanted to have clean and simple tools at hand.

We felt a bit like pioneers so we probably were more thorough in our preparations than ‘ordinary’ parents at a clinic with CSII experience would be. One of us wore a pump with saline solution for a couple of days to test the sensation of the 6 mm 90 degree steel needle we had been recommended.

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Talking about pump therapy, of course, it was crucial to ensure, that Emilie herself was in fact interested in this kind of therapy at all … Therefore, at an early stage, we had told her that this alternative method to treat diabetes did exist. We told her about the implications – among other things the need to be physically connected to the device 24 hours a day – but of course, we did also put a certain weight to the fact that she did not have to take injections several times a day.

From the first time we told her - when she was around seven years old - she was very motivated to try it. During the whole process we have been testing this attitude because to us it is evident that without a positive attitude – well, without a pronounced wish – from the child who has to carry the pump on her body every day, pump therapy in children is not an option.

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