Part 2: Diagnosing FASD is trickyby Cara Hetland, Minnesota Public Radio,
Tom Robertson, Minnesota Public Radio
St. Paul, Minn. — Fetal Alcohol Syndrome was first identified as a medical condition in 1973. Each year, 40,000 children are diagnosed with fetal alcohol spectrum disorder. That's a range of disabilities children and adults experience, depending on how often their biological mother drank and where she was in the pregnancy.
FASD is the leading known preventable cause of mental retardation and birth defects.
Despite decades of research, there are still many questions about the disorder. Children exposed to alcohol in the womb are often misdiagnosed with attention deficit disorder, hyperactivity or other cognitive disabilities. However, unlike those conditions, alcohol-exposed children don't respond to medication.
Dr. Eugene Hoyme spent years studying fetal alcohol syndrome at Stanford University. He's now head of pediatrics at Sanford Health in Sioux Falls, South Dakota. Hoyme travels the world developing better ways to diagnose and treat kids exposed to alcohol in the womb.
Hoyme says that alcohol exposure changes the deepest part of their brain, so their automatic neurological responses don't work properly.
"The network isn't wired correctly, and medication isn't going to help because it's the structure. But these kids do respond to different teaching techniques," says Hoyme. "The other thing is children with FAS need repetition. They don't really learn as quickly."
Dr. Hoyme helped develop the diagnostic spectrum used with alcohol-exposed children. It looks at the whole child, from physical features to cognitive thinking and motor skills. Around the country, there are several different approaches to diagnosis.
In Minnesota and the Dakotas, professionals take a team approach. It's a complex process that includes physicians, psychologists, therapists, teachers and social workers. It takes a full day to evaluate a person, and only a handful of children can be diagnosed each month.
Hoyme says he's now studying ways to diagnose children at birth. Most kids aren't diagnosed until they are around age 3 or 4. Hoyme says the earlier a child is identified with FASD, the spectrum of fetal alcohol disorders, the sooner that child can get help.
"We don't take the time, and a lot of kids are being misdiagnosed. We don't really have the tools yet, those are being developed," he says.
In Minnesota, some 50,000 people are likely affected by fetal alcohol spectrum disorders, but those victims remain largely hidden. Experts say FASD is grossly underreported because few doctors are trained to diagnose it. Just a few years ago, there were only a handful of places to go for diagnosis.
In 1997, then first lady of Minnesota, Susan Carlson, launched an initiative to focus attention on FASD. The following year, the state Legislature provided nearly $7 million for education and prevention. Carlson's efforts also led to the creation of more diagnostic clinics throughout the state.
Lakewood Clinic in the central Minnesota town of Staples is one of about a half-dozen FASD clinics in Minnesota. Five times a year, a team of health care professionals gathers to diagnose people suspected of having FASD. There's typically a three- to six-month waiting list, and about 75 percent of the people evaluated will be diagnosed with some form of FAS disorder.
Matthew Roden, who is 10, is one of five people in for an evaluation on this particular day. The all-day process begins with a physical exam with Dr. Sarah Israelson.
As Matthew takes some deep breaths for Dr. Israelson, he tells her about the pets he has at home on the family dairy farm and how he loves to ride his bike. He seems happy to answer the doctor's questions.
"Well, do you know why you're here?" Dr. Israelson asks.
"Yeah," says Matthew. "To check if I have fetal alcohol syndrome."
"Do you have any idea what that means?" the doctor says.
"That my mother drank when I was in her tummy," Matthew answers.
"Very good, wow. You are right on the ball," Dr. Israelson says.
Matthew has lots of problems. He's impulsive, easily distracted and frequently throws temper tantrums. He should be in fourth grade, but in some areas he still performs at a third grade level.
And Matthew wets himself, not at night, but during the daytime. For that reason, Matthew's dad and stepmother decided last fall to school him at home.
Matthew's stepmother, Melody Meyer, says FASD is all new to her. She had no idea what it was until Matthew got checked out, but she hopes a firm diagnosis will help them deal better with Matthew.
The more Meyer learns about the disease, the more she worries about the prospects for Matthew's future. "He's already acting like he's just plain lazy. I don't know how else to sum that one up, lack of motivation," Meyer says. "He'll sometimes lay down to take a nap, he'll sleep 18 hours. I guess what worries me is when he talks to himself so much. His anger -- the older he gets, the shorter his fuse, the quicker he'll fly off the handle."
At the end of the day, Matthew got his diagnosis. Because he didn't meet the growth deficiency criteria for full blown fetal alcohol syndrome, Matthew was diagnosed with partial FAS. It's a label and a condition Matthew will have to live with the rest of his life.
Cara Hetland has been a reporter for southwestern Minnesota and eastern South Dakota since 1989.