How tiny pump changed life of young diabetic

Published on Monday 20 April 2009 19:59

IT HAS been a rollercoaster 18 months for our family after my daughter Daisy was diagnosed with type 1 diabetes in November 2007. As she was then just 18 months old, we embarked on a strict regime of hourly blood testing, diet control and four insulin jags a day, followed by a programme of constant learning that will never end for our family of five.

Despite our efforts, Daisy's blood sugar levels remained erratic, and it was obvious that small amounts of carbohydrate or insulin could swing such a tiny frame in any direction.

There is no disputing that toddlers are resilient and adapt to lifestyle changes, but as her parents we still consider her to be exceptionally brave. With needles coming from all directions since her diagnosis to this day, she never flinches or resists a jag. As her parents we think she is a high spirited and remarkable little girl.

After 11 months of blood sugar highs and lows we finally embarked on insulin pump therapy in September and the learning began all over again.

A small mechanical device worn on the hip, the pump delivers insulin into the body via a thin subcutaneous infusion tube based on information we input. It remains in place for three days before the injection site is moved.

As parents of a toddler using an insulin pump we have a united opinion as to its effectiveness – for us, the therapy has worked. It helped to stabilise Daisy's blood sugar levels within hours of the pump first being fitted.

While using the pump, a completely new approach to treating Daisy's diabetes began to unfold. The theory is that the more accurately we input how many carbohydrates Daisy eats, the more effective the pump is at counterbalancing rising sugar levels by infusing insulin.

We also have to input regular blood sugar readings, and from this data the pump works out how much adjustment insulin is required. Critical data such as adjusting how much insulin is left in her system from the last dose and her ratio of insulin to carbohydrate that differs throughout the day is all carried out by the pumps clever technology, data we could never have utilised while injecting.

The pump also constantly drip feeds tiny amounts of insulin throughout the day to act as a basal (or background) treatment. This too can be programmed to alter at different times of the day.

In the case of small children like Daisy, a growth hormone secreted throughout the night, which raises blood sugar levels, is counterbalanced by the pump increasing the background levels to suit for the given period.

Using the pump for the first time, we realised diabetes must be one of the most complex diseases known to mankind. It's amazing that such tiny malfunctioning islet cells in the pancreas have such a great responsibility to the whole body.

The technicalities of using a pump are best explained by a consultant. In our case we had excellent support from our diabetic team in Ayr, involving learning sessions and trials using a pump in which the insulin was replaced with saline solution. We were both hooked up to pumps for three days and had to use them pretending we were diabetic too. It was a great insight for us to be able to really understand how they work and to be able to sympathise with Daisy who will have to wear it forever.

Daisy then wore the saline pump for three days to assess her reaction to it. Fortunately, she took to it well after she realised it meant no more jags.

After the pump went live, Daisy reacted well. For the first seven to ten days we had to blood test her hourly – including throughout the night. Given that we had Ben, who was just five months old and Sam, barely four, this was difficult and being so deprived of sleep and yet having to be so aware and conscious was terribly hard.

It did bring considerable strain to our family and the timing wasn't ideal for us, but we wouldn't like to put other families off for this reason. Our advice is to have time and dedication for a good four weeks – for us, the reward was worth it.

Daisy's sugar levels were under far better control and she was noticeably happier. She still pains a little bit when we have to change her infusion set, but we soften the sting with some local anaesthetic.

We were delighted she could now eat whatever she wanted and snack whenever, as long as we knew how many carbohydrates she was consuming.

Little children like Daisy are difficult to feed and choosy by nature, so many of them tend to graze throughout the day. Fortunately, every morning she has the same breakfast of a weetabix, half a banana, levelled with hot milk then mashed. This contain exactly 36g of carbohydrates and that's the figure we input to the pump.

Daisy frequently has boluses (small infusions of insulin), each time she eats or snacks. This system has to offer better control than four larger insulin injections.

As parents of a type 1 diabetic child our aim is good blood sugar control so there is no guilt required in not committing to pump therapy if you are managing fine. If you feel a better blood sugar balance might be achieved using a pump, we believe it should be fully funded and available to all children. It will make a difference to their wellbeing.

It seems cruelly ironic that Daisy was given the freedom to eat whatever she wanted just before she was diagnosed with Celiac disease, which happened in December 2008. Her happy demeanour was interrupted by a bloated tummy, horrific nappies and a "terrible twos" temperament we refused to accept. We did not know there was a link between the two diseases and an almost 10 per cent chance of diabetics contracting the other condition. We have to admit that the diagnosis was a relief, as we knew she was a sick little girl. Fortunately it can be resolved by exclusion of gluten from her diet, but that means a lot more books and learning.

We consider ourselves blessed to have three happy, healthy children, and the past 18 months has served as a great bonding experience as we have tried to live with Daisy's conditions. At two years old, she can now say "diabetes" but the hard job will come in teaching her all that comes with it.

Daisy seems to keep smiling through whatever nature throws at her.