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Wednesday, February 26, 2025

Struggles of parenting four children with diabetes

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20161119

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.

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