Seattle Children's helping families manage Type 1 diabetes

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by JEAN ENERSEN / KING 5 HealthLink

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KING5.com

Posted on September 17, 2013 at 6:08 PM

Updated Tuesday, Sep 17 at 6:50 PM

Imagine your child suddenly becomes lethargic and goes unconscious without warning. That’s sometimes the first warning parents get that that their child has Type 1 diabetes, and it can happen even when there’s no family history of the disease.

At first they thought it was the flu.

“Sorry, four years later this still gets me,” said Charis Tucker. “I was on the phone and I said my child is dying, my child is dying and I don’t know what to do.”

What Lily Tucker’s parents didn’t know is that she had Type 1 diabetes.

“She was in ketoacidosis and had slipped into a coma and they were within seconds taking her up to ICU,” said Brad Tucker.

“The first this they said to us was we don’t think she’s going to die, but be prepared for the worst,” said Charis.

“If continued to be untreated, then it can lead to brain swelling and ultimately brain damage or death,” said Seattle Children’s Dr Joel Tieder.

Diabetes ketoacidosis is when blood sugar levels are so high, the blood turns acidic.

“Children will get it when they first get diagnosed. The reoccurrence of it is the preventable one,” said Dr. Tieder.

That’s why Dr. Tieder was surprised to find in his study that one out of five children admitted to the hospital nationwide for this life-threatening condition were repeat cases.

“One could imagine that that second hospitalization or the third or the fourth would have been preventable had the health care system intervened at the right level at the right time,” said Dr. Tieder.

What it takes to prevent a recurrence is careful management of this complicated disease, but that doesn’t mean missing out on life.

“We did say to her, ‘You know, Lily, you are going to have a choice. You’re either going to be Lily who still loves to dance and swim who also has Type 1 diabetes or you’re going to be Lily with Type 1 diabetes,” said Charis.

Lily hasn’t had any more episodes, but the drama wasn’t over for the Tucker family. Older daughter Evie was next.

“They were diagnosed 10 months apart,” said Charis.

By then Brad and Charis Tucker recognized the early warning signs and are now keeping an eye on their other two.

It can be a tricky balance. While most kids their age are busy texting, Lily and Evie are more likely to be tracking blood sugar levels on their electronic devices. Both chose to keep dancing and swimming.

“Sometimes it kind of helps to have diabetes ‘cause it kind of inspires you to work harder,” said Evie.

“Don’t  be afraid to just be yourself. You can still do the things you want to do. You have to take over your own diabetes. Your diabetes can’t take over you,” said Lily.

Seattle Children’s was one of the first children’s hospitals in the country to institute a program to prevent hospital re-admissions for diabetic ketoacidosis.

Only about 10 percent of those diagnosed with Type 1 diabetes have a family history of the disease.
 

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