The reality for children living with diabetes

Between The Lines

Children living with diabetes

In the region of 100 children in Mayo have Type 1 diabetes and their lives are anything but straightforward.

Edwin McGreal

IT is only from seeing the contents of the little bag they carry around with them that you would know that Mikey Sweeney, aged six, and eleven-year-old Sarah Ryan have diabetes.
Both of them are typical youngsters in terms of what they play, what they like to do and how they act. But they cannot lead normal lives. Neither can their parents. Having Type 1 diabetes - an auto-immune deficiency where their pancreas fails to regulate their blood sugar levels - means that both have to be their very own carers.
You can only really begin to appreciate that reality when you see Mikey inject his body with insulin and watch Sarah prick her finger to measure her blood-sugar levels before administering one of her five injections a day.
That they can and will do it themselves speaks volumes for how responsible and comfortable they are with the procedure. You’d nearly forget their age. But they are still children.
“Every time Sarah eats, she has to inject herself with insulin,” Sarah’s father Joe, Chairman of the Mayo Parent Support Group of the Diabetes Federation of Ireland, tells The Mayo News. “She has to do it five times a day, that’s what life involves for Sarah. Unless you live with diabetes, you don’t understand. If you ask anyone out there about diabetes, a lot of them will say ‘well that’s something you get from eating too much sweet stuff,” added Joe, with all the parents in the room nodding in agreement. Keeley O’Malley tells the story about how another parent told her daughter that ‘if you didn’t eat so many sweets, you wouldn’t have diabetes’.
Type 1 diabetes is different in that regard, it is not diet-related and those who have it can do little to stop it. As part of their care, children with Type 1 diabetes in Mayo attend clinics at Mayo General Hospital in Castlebar and the parents have nothing but praise for the work the two diabetic nurses and the consultant pediatrician do for them but they are, as one parent says, operating with ‘one hand and one leg tied behind their back’. The lack of an endocrinologist - a consultant who specialises in diabetes, is the greatest reason for this, the parents argue.
Life is far from straightforward for parents either. While Mikey and Sarah have progressed to the stage where they can treat themselves during the day, Rachel Brennan’s three-year-old son clearly couldn’t be at that level.
Massbrook- based Rachel Brennan, who has diabetes herself, is essentially a full-time carer at the minute.
“He has started playschool and it could be six or seven times a day that he’d be getting injections. I have to go there and do it, I have no choice. A lot of times, if his [blood-sugar levels] reading goes low, like it did the last day, I have to wait and monitor until it comes back up. I had planned on going back to work once the kids went to school but I can’t do that now, it is a non-starter,” she admitted.
The regimental lifestyle for those children and their parents living with diabetes is clear to see when you chat to the group. As Keeley O’Malley from Westport points out, nothing can be spontaneous.
“You cannot relax. You’re living through your child and are clock-watching the whole time. You have to plan everything with military precision. We went to Galway one day to visit my aunt and when we got there we had to turn back because we realised we forget my daughter’s insulin pen. There was no choice in the matter, we had to turn around and go back home.”
And there is, of course, the impact on children with diabetes who just long to be normal. Parents recount several instances of their kids going to parties and other parents getting in a fluster wondering what sweets they can give them, the kids only too aware of how they are being singled out, even with the best of intentions. It can become more of an issue in their teenage years too.
And, it must be pointed out, taking their required amount of injections every day is not a guarantee against problems either. Some times a diabetic’s levels can go dangerously low and they may require an injection of glucogen - also part of the kit diabetics carry with them everywhere. But the problem is that when they are so low as to need the glucogen, they are usually so disorientated or have passed out that they cannot inject themselves.
Normally, a parent or someone familiar with the condition will be close by but not always.
“Diabetic teenagers would be at a disco and when your levels go low you could act as if you were drunk and causing trouble and the diabetic condition would not be known to any staff member and could possibly result in the teenager being thrown-out through no fault of their own and ending up in a coma.”
The parents long for a scenario where children in Mayo with Type 1 diabetes could be fitted with an insulin pump which both monitors and administers the insulin as it is needed. That equipment is available to children in the Dublin area and in other parts of the country but not for children in Mayo. Sure, they can be fitted with it but if they get sick and need to be treated in an emergency at the nearest hospital, the staff at Mayo General are not trained to deal with the specialised equipment.
The Parents’ Group may long for the pump but, in the shorter term, they would be much more at ease if there was an endocrinologist based at Mayo General Hospital catering for their needs. Amazingly there are five endocrinologists based in Galway, one in Sligo General, one in Roscommon but none at Mayo General. The HSE have informed The Mayo News that ‘funding has been approved for the recruitment of a consultant endocrinologist for Mayo General’ and ‘the appointment is currently being progressed through the normal HSE approval process’.
The Parents’ Group hope that this will ensure a higher level of expert care but remain cautious

The Mayo Parents Support Group hold regular meetings and the next is Thursday October 20 at 8pm in The TF Royal Hotel.For further information contact Joe Ryan at 087-2247291 and Facebook ‘Mayo Parents Support Group’.