TIPPERARY mum-of-three Jane Ryan describes herself as the mother who was always turning up.
She’d turn up at her children’s school lunchtime and in the middle of birthday parties and play-dates they were attending.
Married to Fethard farmer Richie, the couple have three children— Ben, 9, Emily Mai, 7 and Harry, 4. All have type 1 diabetes.
Ben’s diagnosis at 22 months was “a total bolt from the blue”. Emily Mai was diagnosed aged three after she began wetting the bed and drinking a lot. “It was a shock to the system to find I had two children with it.”
Jane kept a close eye on Harry and within six months of Emily Mai’s diagnosis, he was diagnosed too.
“He wouldn’t settle in his cot one night. I checked his blood sugars and nearly got a heart attack to see that they were so high. He was only 15 months old; he hadn’t even got his first pair of shoes.”
By 2011 all three children were on insulin injections twice daily and diabetes was controlling their lives.
“They were having to eat every two hours. It felt like I was constantly feeding them. They’re fussy eaters and it became a battle.”
Jane had to drop into the children’s school at lunch-hour to give them insulin injections.
“If their blood sugars were high at small break, I’d be called in to give them an insulin booster injection. They could only go to friends’ houses for an hour because you’d have to check blood sugar levels. If they were going to a birthday party, I’d be asking the other parent what time they’d be serving the food. I’d be hanging around town and going in to check half-way through.”
For a 20-month period between 2012 and 2014, each child was on five insulin injections a day — Jane and Richie were administering a grand total of 105 injections weekly. But since last year, the Ryan siblings’ diabetes management has been revolutionised by a device about the size of a small mobile phone.
A mini-computerised device, the insulin pump is attached to the child by plastic tubing just under the skin. It delivers continuous 24-hour insulin based on the child’s requirements. The amount delivered can be changed by child or parent.
The children are under the care of Dr Stephen O’Riordan and Dr Susan O’Connell, consultant paediatric endocrinologists at Cork University Hospital, and their specialist diabetes team.
Adapting to insulin pump therapy required Jane and Richie to learn how to count carbohydrates and read food labels. Initially, the children wore the pumps over a weekend to see if they liked them.
“Blue pumps for the boys and purple for Emily Mai certainly helped,” says Jane.
All three gave the pumps the thumbs-up. The Ryan family, along with the children’s teachers and SNAs, underwent intense one- and-a-half-day training at CUH’s dedicated ‘pump school’ so they could learn how to use and manage the therapy.
The children wore the pumps for a week using only salt water, so as to get used to them and to identify any issues before starting on insulin.
With support from the diabetes team, they were well established on the insulin pumps by week three.
“We’re now controlling the diabetes rather than the diabetes managing the children’s lives,” says Jane.
“I don’t have to appear at the schools daily; they can go to parties and on play dates. They can eat what they like when they like because we know how to check their blood sugars, check labels to count carbs and input the data to the pump. The pump diffuses insulin based on these details.
“At night I check in on them less often and only have to wake them occasionally to take lucozade to regulate blood sugar levels, compared to when they were on insulin injections.”
Dr O’Riordan says insulin pump therapy has been available outside Dublin only in the last five years.
“The majority of children under six in Ireland who have type 1 diabetes are on pumps.”
He says insulin pump therapy is the most physiologically-friendly way of delivering insulin because it works like the pancreas. “With type 1 diabetes, life can be quite rigid pre-pump. The pump gives flexibility and quality of life.
“The children can eat what they want when they want — they don’t have to stick to a set routine. In the right hands, it’s an excellent way of delivering insulin but it doesn’t take the diabetes away and it isn’t for everybody.”
Factors considered when assessing patient suitability for an insulin pump include whether the parents are managing well the basics of diabetes care.
Are they checking blood sugars, getting these in the targeted range and administering injections appropriately? Can they count carbohydrates? Is the family unit supportive of each other? Is one parent at home at all times to keep an eye on the child’s diabetes care?
Of the Ryans, diabetes nurse specialist Norma O’Toole says: “It’s their positive, can-do attitude that resulted in the children being candidates for the pumps .”
* Diabetes is a serious metabolic condition in which the body fails to produce enough insulin to regulate blood glucose (sugar). The vast majority of diabetes in childhood is type 1 diabetes. It creates a significant daily family burden for children and their carers. Incidence of type 1 diabetes in children is increasing yearly – it’s at epidemic proportions in the under fives.
* Up to 3,000 children aged under 18 have type 1 diabetes. The CUH clinic sees about 400 children with this form of diabetes. “To find three siblings in one family with it is quite unusual, though we see many families with two children affected,” says Dr O’Riordan.
* If a child’s diabetes is poorly controlled, they are very prone to eye disease and blindness in their lifetime. They are also at increased risk for cardiac disease, kidney disease/failure, peripheral nerve disease, poor sensation in fingers and toes and to have issues with sexual function. Once it’s well controlled, risk of complications is massively reduced to about the level of someone without diabetes, confirms Dr O’Riordan.
* Insulin pump therapy brings significant practical benefits, says Dr O’Riordan – “a reduction from five insulin injections per day to one infusion set change every two days; also reduced incidence of low blood sugar at night”.