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Struggles of parenting four children with diabetes

November 20, 2016

Hsiao-Ying Rose and her husband, Damien, with children from left, Ben, Lily, Ava and, Charly. PHOTO: CHARLES KONG SOO

 

Looking at Hsiao-Ying and Damien Rose's four beautiful children—daughter Charly, ten; Ben, seven and the adorable two and a half-year-old twins Lily and Ava—playing rambunctiously at their Petit Valley home, it is hard to believe that they have diabetes until it is time for their mother to administer their daily injections of insulin at dinner time.

With each child's meticulously logged journal cataloguing the dates, time, insulin doses and food consumed laid out in front of her, Rose mixes two types of insulin, the slow-acting NPH (N) and the rapid-acting Regular (R) or humulin in syringes for their Type 1 diabetes condition.

Rose said, "Damien's brother is a vet in London and he sends these veterinary needles that are only 6mm long, compared to CDAP's (Chronic Disease Assistance Programme) inch-long needles.

"We only use the needles he sends. If we run out we have to use the large ones.

"Psychologically, seeing the big needle, the children are scared, they're already scared having to take injections twice a day.

"They test four times a day. Every day when they wake up the first thing they do is test their fasting blood sugar level at 6 am, administer an insulin shot and have breakfast, morning snack at 9:30 am, test at 11:30 am, lunch, test at 3:30pm, afternoon snack, test at 6 pm, dinner, insulin shot after and a bedtime snack."

Rose said both sides of their families had no history of diabetes, and neither does she and her husband.

Not even local doctors have been able to determine how this has happened. She said researchers at the University of Exeter in London were conducting genetic testing to treat diabetes without insulin and a local diabetes/endocrinologist, Dr Virendra Singh, enrolled the children into the study.

Damien said the CDAP system was more geared towards adults than children. He said the programme gives out 50 testing strips a month per patient, but each of their children goes through 120 strips per month compared to an adult, who does not have to test as often.

Damien said the situation is compounded when CDAP runs out of drugs; sometimes they receive half the children's insulin supply and the family is forced to buy insulin and testing strips outside at their own expense.

He said when Charly was first diagnosed with diabetes at age two by paediatrician Dr Vanessa Stewart and diabetes/endocrinologist Dr Leonardo Akan, it took eight months to get her blood glucose testing metre. Her son, Ben, was diagnosed at 11 months, Lily at 16 months and Ava at 21 months.

Damien said the drawback of CDAP's slow-acting NPH (N) and fast-acting Regular (R) humulin or novolin insulin was that they had to be mixed and administered half an hour before eating and presented challenges if a child was a finicky eater. He said there was an even faster-acting insulin called Humalog that can be give at mealtime, but the cost can be prohibitive for some people since one ten ml vial costs $350.

Damien said he spends around $1,600 a month on testing strips and insulin for his four children.

Rose said for families with diabetic children, an internal support system of family and friends was extremely important.

She said both her husband and her family were abroad, they were fortunate to have Damien's mother, Jackie Rose, and Myrnelle Ryan, the nanny, who were both "absolutely tremendous."

Rose said Ryan did so much for the family, especially the twins, learning how to test them and give them their insulin and how to deal with their lows after watching her do it.

She said there was now an app to help families with diabetic children support one another and share information.

 

 

(To view this original article from the Guardian, click this link) 

 

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