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Sask. families happy to have drug covered by province

Sep 26, 2013 | 5:00 PM

Leah Creighton figures it would cost her family about $1,200 dollars a day if they had to pay out of pocket for the drug Kuvan.

Creighton and her husband have four children, three of which were born with a rare brain disorder called Phenylketonuria (PKU). Patients with PKU cannot process “Phe”, an essential amino acid found in protein.

Before Health Canada approved Kuvan in 2010, the only way to control PKU was through a strict low-protein diet. The Creighton children weren’t able to eat foods such as meat, eggs, nuts, beans, milk and cheese.

Kuvan allows the kids to tolerate more protein in their diet.

“We watch their diet very carefully and we weigh all the food that they eat and make sure they are not getting too much protein,” Creighton said as she sat on her couch in her home in Saskatoon.

Newborns are screened for PKU through bloodspot collection.

Heather Garton is a Saskatoon mother of four-year-old Cassandra Bishop, who also has PKU. Both Garton and Creighton had never heard of the disorder when they were notified by their respective doctors shortly after their children were born.

Garton said after being educated by the health region, she turned to the community for support. Bishop is not on Kuvan and would need to qualify for the drug.

Before the Creighton kids were on Kuvan, they would have to eat special low-protein foods like cereal and bread. Last January, Saskatchewan decided to cover the cost of those specially imported foods.

Creighton said her 10-year-old son Jordan still won’t eat meat because he is scared of what it will taste like.

“Even introducing cheese to him, he won’t eat cheese most of the time. The first time he ate cheese he kind of licked it and didn’t really want to eat it,” she said.

Bishop is still stuck with a strict diet. This year, an educational assistant helps her track her food at pre-school.

“It’s very difficult. It’s mostly fruits and vegetables,” Garton said.

Creighton said despite Kuvan, it can still be very stressful and frustrating.

“They want to have birthday cake, they want to have ice cream, they want to have chips,” she said, adding before Kuvan they would have to bring a scale to birthday parties to weigh the food.

“They just want to have a snack sometimes. They will come into the kitchen and just start snacking sometimes and I’ll have to tell them, ‘You know what? If you didn’t have PKU, I wouldn’t care– just eat whatever you want but you can’t do that. You have to weigh what you are eating and actually, you can’t be eating that! Stop eating that!’”

Creighton said now that her kids have had a taste of naturally-occurring protein, she thinks it would be hard to take them off the drug and go back to synthetic protein.

“My daughter, when she first had meat, she just loved it. She had fish, I remember, and she just loved it. She couldn’t believe how delicious it was,” she said.

As for Bishop who has a classic form of PKU, she might not respond to Kuvan as well as people who have a lesser form of it. Garton said they want to try it because there have been exceptions.

Creighton said she can understand the frustration her kids feel.

“Food is a very important part of life. As human beings, we celebrate with food. When we get together with family, we eat. That’s what we do and to not be able to eat what everybody else is eating and have your own special food is hard,” Creighton said.

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