If I had to explain in one word what life with a diabetic child is like I would have to say – challenging.
Leighton was diagnosed with Type 1 Diabetes when he was only 14 months old and was air lifted to Brisbane where he spent 4 days in ICU. We knew nothing about Type 1 Diabetes before this, but we did know was that diabetes was a manageable condition and it could have been something much worse.
We had no idea of the impact this would have on our lives. It was not just learning about diabetes and its management, that proved challenging, it was adjusting to life with a new baby too. Our second son was only 3 days old when Leighton was taken to Brisbane.
We started to notice something was not right while he was still in hospital, when he had a reaction to the insulin. As the weeks went by his injection areas began to hollow and waist. Our diabetes management was also made a harder due to Leighton’s extreme needle phobia, and having to physically restrain him for injections only added to our mental anguish.
I was deemed a ‘paranoid mother’ when ever I made the suggestion that his tissue was disappearing at injection sites, and that we had to do something different.
An insulin Pump was suggested as a possible solution, to the condition we still didn’t have a name for. So in December 2002 Leighton got his first Pump, 3 weeks before his third birthday. It did not make any difference, we still had fat and muscle wastage.
Mid 2003 Leighton’s condition finally had a name – Lipodystrophy. But this was only the name for the fat and muscle wastage, not the poor and erratic control we were starting to have due to the fact we were using deeper muscle and some of our injections would hit bone, and we were fast running out of areas to inject into.
In the years that followed we tried many different things to stop the reaction to the insulin, we tried all available brands, porcine insulin, and we also mixed Dexamethasone with his insulin to try and maintain some tissue, but still nothing worked.
In 2004, we herd about the DiaPort implant that had been done in Perth and felt it was our only hope, we packed up our family and drove to Western Australia to see if the doctors over there could help us. They couldn’t, so back to Queensland we came.
It was another four years of battling with Doctors and Diabetes, feeling totally frustrated and continually being told no one could help us, before we would get any relief, and all of the time Leighton’s general health was slipping.
2008 was our worst and best year all rolled into one. In March Leighton started to refuse to have any more injection, his control was getting worse and in July his Hba1c was 11%. Once again we needed to find a solution. The DiaPort, we knew about it but the doctors felt it was not a good option, we felt it was our ONLY option. So after many months of doctors meetings, hospitalisations and trips to Brisbane, Leighton was to get a DiaPort implant.
Our only catch was we had to go to France to have the operation done. With the small issue of travelling half way around the world for the opp. Out of the way, it was one of the best decisions we have ever made. Life with the DiaPort has been wonderful, and we have normality back in our lives.
Diabetes is much easier to manage when everything works the way it is supposed too.
My Life Journey
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