Would you want to know if condition is incurable?
By PAUL NYHAN
P-I REPORTER
Would you want to know if your toddler is more likely to develop Alzheimer's?
In the next two decades, parents are expected to have new options to test their children for genetic traits that raise the odds they will contract any number of conditions, such type 2 diabetes, depression and possibly autism, experts suggested last week.
Those breakthroughs are expected to push parents deeper into the ethically fuzzy world of genetic testing, where there appear to be more questions than answers.
Do you test a newborn for a disorder that has no cure? Does a child, or her parent, need to know she carries the gene that makes her susceptible to breast cancer?
A "core piece of advice is you shouldn't do genetic testing just because it's available," said Dr. Douglas Diekema, who works on pediatric bioethics at Seattle Children's Hospital and Regional Medical Center. "If there is a test (that) came back positive, what would be the benefit for my child? Is there something we could do?"
Children's Hospital is near the center of this debate because it's home to one of the country's few organized centers for pediatric bioethics.
It sponsored a conference on the topic last weekend.
At the center, doctors work with geneticists, genetic counselors and policymakers to understand the rapidly evolving area and help with specific cases.
Researchers across the country are grappling with emerging challenges of genetic testing.
Six years ago, most states screened newborns for a handful of disorders,and today most screen for 29.
Washington screens for 24 disorders, including phenylketonuria and cystic fibrosis, and will add a 25th by the end of August.
While tests are largely mandatory – some parents may opt out for religious reasons – in coming years parents may face decisions of what or whether to test for other disorders, if testing is expanded.
It will create yet another level of knowledge for a generation of parents already coping with a mother lode of information.
"There is so much information out there, there is the danger of misinformation and information overload," said Mirtha Wilkens, a media project manager for Children's Hospital, who is expecting her second child this fall.
In the next couple of years, doctors may begin expanding tests by adding disorders that can't currently be treated, such as Duchenne muscular dystrophy and spinal muscular atrophy.
The move would represent a major shift because babies currently are mainly tested for treatable genetic disorders.
As parents of two adopted children, Andy and Pam Heyman see the benefit and ambiguity of pediatric genetic tests.
When the South Seattle couple adopted their two children, they had to decide if they would accept a child with sickle cell anemia – a tested condition – during the process.
They said yes and their 9-year-old daughter, Josie, has sickle cell, while 4-year-old Adam does not.
Yet, Andy Heyman, 38, isn't not sure he would embrace tests that may emerge unless there is compelling evidence that parents can do something about the condition.
Heyman also worries about how institutions would use genetic test results.
"If choice rests with individuals, I am much more comfortable than if it's (in the) hands of institutions," he said.
Expanded newborn testing could create a new set of worries and opportunities for parents. They will receive more false positives if there are more tests and get called back for anxious second tests.
Some parents may want to know about incurable disorders so they can adjust their lives, and more diagnoses might create more research opportunities and potentially treatment breakthroughs, experts said at last weekend's conference.
If parents are going to be confused, scientists already are grappling with their own ethical confusion.
For example, researchers are uncovering genetic flaws that might be evidenceof cystic fibrosis. And they may not be.
In a child with no symptoms, they see genes that are not quite normal, yet not typical evidence of cystic fibrosis, according to Dr. Beth Tarini, a research investigator at University of Michigan's Child Health Evaluation and Research Unit.
"You are left telling the parents 'I am not sure if your child has cystic fibrosis,' " Tarini told a room full of researchers during last weekend's conference.
If doctors and researchers are conflicted, what are parents supposed to do?
In the information age, parents have resources, but they should beware because the quality of online genetic testing guides varies.
"I think as a general rule that (sites) either sponsored by NIH (National Institutes of Health) or academic institutions are the most likely to be reliable," said Children's Hospital's Diekema.
Of course, your best source often is your family's doctor, Diekema suggested.
In the uncertain field of pediatric genetic testing one thing appears certain: It will add another level of worry to the often anxiety-ridden job of parenting.
"Becoming a parent there is enough to worry about," Andy Heyman said.
Thursday, July 31, 2008
Children's Development Center helps autistic children develop
It was more than a year ago that Megan Ruth first realized her son Kaeden Badger wasn't "doing things a normal 2-year-old should do."
"We had tremendous communication issues," Ruth recalled.
When she was told her son had autism, she enrolled him in Reaching Beyond Limits, a pre-school class at the Children's Development Center for autistic children and children with severe language delay.
"Within two months of him being at the CDC, it went from him falling on the ground and crying, to taking my hand and walking me somewhere," Ruth said.
She learns about her son's school day from a report sent home daily, documenting what he eats, says, plays with and more.
"When I ask him if he did this or that, he doesn't give me a response. He's nonverbal," Ruth said.
About a month ago, the students in Kaeden's class went on a field trip to a therapeutic horse-
riding facility. When Ruth asked her son about his day, "he stood up in his chair and started to clap. That was the first time I had gotten any feedback."
One day she visited the class to see her son spelling out his name with Scrabble tiles.
"I was blown away," she said.
On a typical school day, Kaeden joins five other preschool-aged boys. Their day begins with large headphones over their ears and a compact disc player strapped around them as they sit at the small table, waiting for snacks and juice.
Sounds and music at alternating volumes, changing from ear to ear, help engage different parts of the brain, teacher Christine King explained.
From King, therapeutic support staff member Gina Mostoller, occupational therapy assistant student Melissa Good, speech language pathologist Joan Dice and certified occupational therapy assistant Renee Cerney, the students receive personalized attention each day to help them build relationships.
"Our goal is to get the kids to interact with us," King said, while asking a student if he would like a cracker.
She and the other instructors use simple sign language while speaking about the food.
"Most of them are very low verbal," King said.
"If they don't talk, they have to have some way to communicate," Good said.
The students have to work for their snacks and toys. The instructors wait for a child to request an item.
"Sometimes it's a matter of requiring them to use their language," King said.
Autism is "a spectrum disorder," Mostoller said, which means each child's symptoms are different, ranging from verbal skills, sensitivity to different touches, lack of awareness of their body and more.
Throughout the day, the children do "heavy work" such as dragging a bag full of corn and wearing weighted vests during therapy sessions. Instructors also apply "deep pressure" by pressing against the boys' shoulders and arms.
"It gives them a sense of their bodies," Mostoller said.
Before lunch, the students rotate through "centers," each one focusing on a separate function.
In the "boxes" center, the goal is for children to work independently by sorting colors and shapes.
In the gym, Cerney activates different muscle groups with swings, scooter boards, puzzles and a climbing wall. During floor time on this day, students play, jump, laugh and discover toys one-on-one to develop "circles of communication."
"You have to get into their space and have them look at you and respond," Dice said. "A lot of the activities we do to help them organize the sensory input, helping them make sense of the world around them."
Five-year-old Jordan Kiessling is preparing to enter his second year in the program. His mother, Deborah Kiessling, said her son has made more progress in the Reaching Beyond Limits class than in other programs.
"Now he's beginning to say a lot of words. His eye contact has been a big leap for him ... When you call his name, he's responding," she said.
She credits the sensory stimulation as part of Jordan's success.
"At CDC, it's the first time I've seen more progress and results as far as eye contact, interaction with others and wanting to try things. It's really helped him a lot," Kiessling said. "I give it five stars."
Gabriel Walter, 5, has been in the class since October and is preparing to soon graduate from Reaching Beyond Limits. His father, Joe Walter, said Gabriel has become more independent, his vocabulary has improved and he now forms whole sentences.
"We have come a long way. You can carry a conversation with him now. It just kind of happened overnight," Walter said.
Although he admitted to being skeptical about the program at first, Walter said the individualized attention is helpful.
"I'd recommend it for anyone," he said of the program. "It's just awesome."
"We had tremendous communication issues," Ruth recalled.
When she was told her son had autism, she enrolled him in Reaching Beyond Limits, a pre-school class at the Children's Development Center for autistic children and children with severe language delay.
"Within two months of him being at the CDC, it went from him falling on the ground and crying, to taking my hand and walking me somewhere," Ruth said.
She learns about her son's school day from a report sent home daily, documenting what he eats, says, plays with and more.
"When I ask him if he did this or that, he doesn't give me a response. He's nonverbal," Ruth said.
About a month ago, the students in Kaeden's class went on a field trip to a therapeutic horse-
riding facility. When Ruth asked her son about his day, "he stood up in his chair and started to clap. That was the first time I had gotten any feedback."
One day she visited the class to see her son spelling out his name with Scrabble tiles.
"I was blown away," she said.
On a typical school day, Kaeden joins five other preschool-aged boys. Their day begins with large headphones over their ears and a compact disc player strapped around them as they sit at the small table, waiting for snacks and juice.
Sounds and music at alternating volumes, changing from ear to ear, help engage different parts of the brain, teacher Christine King explained.
From King, therapeutic support staff member Gina Mostoller, occupational therapy assistant student Melissa Good, speech language pathologist Joan Dice and certified occupational therapy assistant Renee Cerney, the students receive personalized attention each day to help them build relationships.
"Our goal is to get the kids to interact with us," King said, while asking a student if he would like a cracker.
She and the other instructors use simple sign language while speaking about the food.
"Most of them are very low verbal," King said.
"If they don't talk, they have to have some way to communicate," Good said.
The students have to work for their snacks and toys. The instructors wait for a child to request an item.
"Sometimes it's a matter of requiring them to use their language," King said.
Autism is "a spectrum disorder," Mostoller said, which means each child's symptoms are different, ranging from verbal skills, sensitivity to different touches, lack of awareness of their body and more.
Throughout the day, the children do "heavy work" such as dragging a bag full of corn and wearing weighted vests during therapy sessions. Instructors also apply "deep pressure" by pressing against the boys' shoulders and arms.
"It gives them a sense of their bodies," Mostoller said.
Before lunch, the students rotate through "centers," each one focusing on a separate function.
In the "boxes" center, the goal is for children to work independently by sorting colors and shapes.
In the gym, Cerney activates different muscle groups with swings, scooter boards, puzzles and a climbing wall. During floor time on this day, students play, jump, laugh and discover toys one-on-one to develop "circles of communication."
"You have to get into their space and have them look at you and respond," Dice said. "A lot of the activities we do to help them organize the sensory input, helping them make sense of the world around them."
Five-year-old Jordan Kiessling is preparing to enter his second year in the program. His mother, Deborah Kiessling, said her son has made more progress in the Reaching Beyond Limits class than in other programs.
"Now he's beginning to say a lot of words. His eye contact has been a big leap for him ... When you call his name, he's responding," she said.
She credits the sensory stimulation as part of Jordan's success.
"At CDC, it's the first time I've seen more progress and results as far as eye contact, interaction with others and wanting to try things. It's really helped him a lot," Kiessling said. "I give it five stars."
Gabriel Walter, 5, has been in the class since October and is preparing to soon graduate from Reaching Beyond Limits. His father, Joe Walter, said Gabriel has become more independent, his vocabulary has improved and he now forms whole sentences.
"We have come a long way. You can carry a conversation with him now. It just kind of happened overnight," Walter said.
Although he admitted to being skeptical about the program at first, Walter said the individualized attention is helpful.
"I'd recommend it for anyone," he said of the program. "It's just awesome."
Children's Development Center helps autistic children develop
It was more than a year ago that Megan Ruth first realized her son Kaeden Badger wasn't "doing things a normal 2-year-old should do."
"We had tremendous communication issues," Ruth recalled.
When she was told her son had autism, she enrolled him in Reaching Beyond Limits, a pre-school class at the Children's Development Center for autistic children and children with severe language delay.
"Within two months of him being at the CDC, it went from him falling on the ground and crying, to taking my hand and walking me somewhere," Ruth said.
She learns about her son's school day from a report sent home daily, documenting what he eats, says, plays with and more.
"When I ask him if he did this or that, he doesn't give me a response. He's nonverbal," Ruth said.
About a month ago, the students in Kaeden's class went on a field trip to a therapeutic horse-
riding facility. When Ruth asked her son about his day, "he stood up in his chair and started to clap. That was the first time I had gotten any feedback."
One day she visited the class to see her son spelling out his name with Scrabble tiles.
"I was blown away," she said.
On a typical school day, Kaeden joins five other preschool-aged boys. Their day begins with large headphones over their ears and a compact disc player strapped around them as they sit at the small table, waiting for snacks and juice.
Sounds and music at alternating volumes, changing from ear to ear, help engage different parts of the brain, teacher Christine King explained.
From King, therapeutic support staff member Gina Mostoller, occupational therapy assistant student Melissa Good, speech language pathologist Joan Dice and certified occupational therapy assistant Renee Cerney, the students receive personalized attention each day to help them build relationships.
"Our goal is to get the kids to interact with us," King said, while asking a student if he would like a cracker.
She and the other instructors use simple sign language while speaking about the food.
"Most of them are very low verbal," King said.
"If they don't talk, they have to have some way to communicate," Good said.
The students have to work for their snacks and toys. The instructors wait for a child to request an item.
"Sometimes it's a matter of requiring them to use their language," King said.
Autism is "a spectrum disorder," Mostoller said, which means each child's symptoms are different, ranging from verbal skills, sensitivity to different touches, lack of awareness of their body and more.
Throughout the day, the children do "heavy work" such as dragging a bag full of corn and wearing weighted vests during therapy sessions. Instructors also apply "deep pressure" by pressing against the boys' shoulders and arms.
"It gives them a sense of their bodies," Mostoller said.
Before lunch, the students rotate through "centers," each one focusing on a separate function.
In the "boxes" center, the goal is for children to work independently by sorting colors and shapes.
In the gym, Cerney activates different muscle groups with swings, scooter boards, puzzles and a climbing wall. During floor time on this day, students play, jump, laugh and discover toys one-on-one to develop "circles of communication."
"You have to get into their space and have them look at you and respond," Dice said. "A lot of the activities we do to help them organize the sensory input, helping them make sense of the world around them."
Five-year-old Jordan Kiessling is preparing to enter his second year in the program. His mother, Deborah Kiessling, said her son has made more progress in the Reaching Beyond Limits class than in other programs.
"Now he's beginning to say a lot of words. His eye contact has been a big leap for him ... When you call his name, he's responding," she said.
She credits the sensory stimulation as part of Jordan's success.
"At CDC, it's the first time I've seen more progress and results as far as eye contact, interaction with others and wanting to try things. It's really helped him a lot," Kiessling said. "I give it five stars."
Gabriel Walter, 5, has been in the class since October and is preparing to soon graduate from Reaching Beyond Limits. His father, Joe Walter, said Gabriel has become more independent, his vocabulary has improved and he now forms whole sentences.
"We have come a long way. You can carry a conversation with him now. It just kind of happened overnight," Walter said.
Although he admitted to being skeptical about the program at first, Walter said the individualized attention is helpful.
"I'd recommend it for anyone," he said of the program. "It's just awesome."
"We had tremendous communication issues," Ruth recalled.
When she was told her son had autism, she enrolled him in Reaching Beyond Limits, a pre-school class at the Children's Development Center for autistic children and children with severe language delay.
"Within two months of him being at the CDC, it went from him falling on the ground and crying, to taking my hand and walking me somewhere," Ruth said.
She learns about her son's school day from a report sent home daily, documenting what he eats, says, plays with and more.
"When I ask him if he did this or that, he doesn't give me a response. He's nonverbal," Ruth said.
About a month ago, the students in Kaeden's class went on a field trip to a therapeutic horse-
riding facility. When Ruth asked her son about his day, "he stood up in his chair and started to clap. That was the first time I had gotten any feedback."
One day she visited the class to see her son spelling out his name with Scrabble tiles.
"I was blown away," she said.
On a typical school day, Kaeden joins five other preschool-aged boys. Their day begins with large headphones over their ears and a compact disc player strapped around them as they sit at the small table, waiting for snacks and juice.
Sounds and music at alternating volumes, changing from ear to ear, help engage different parts of the brain, teacher Christine King explained.
From King, therapeutic support staff member Gina Mostoller, occupational therapy assistant student Melissa Good, speech language pathologist Joan Dice and certified occupational therapy assistant Renee Cerney, the students receive personalized attention each day to help them build relationships.
"Our goal is to get the kids to interact with us," King said, while asking a student if he would like a cracker.
She and the other instructors use simple sign language while speaking about the food.
"Most of them are very low verbal," King said.
"If they don't talk, they have to have some way to communicate," Good said.
The students have to work for their snacks and toys. The instructors wait for a child to request an item.
"Sometimes it's a matter of requiring them to use their language," King said.
Autism is "a spectrum disorder," Mostoller said, which means each child's symptoms are different, ranging from verbal skills, sensitivity to different touches, lack of awareness of their body and more.
Throughout the day, the children do "heavy work" such as dragging a bag full of corn and wearing weighted vests during therapy sessions. Instructors also apply "deep pressure" by pressing against the boys' shoulders and arms.
"It gives them a sense of their bodies," Mostoller said.
Before lunch, the students rotate through "centers," each one focusing on a separate function.
In the "boxes" center, the goal is for children to work independently by sorting colors and shapes.
In the gym, Cerney activates different muscle groups with swings, scooter boards, puzzles and a climbing wall. During floor time on this day, students play, jump, laugh and discover toys one-on-one to develop "circles of communication."
"You have to get into their space and have them look at you and respond," Dice said. "A lot of the activities we do to help them organize the sensory input, helping them make sense of the world around them."
Five-year-old Jordan Kiessling is preparing to enter his second year in the program. His mother, Deborah Kiessling, said her son has made more progress in the Reaching Beyond Limits class than in other programs.
"Now he's beginning to say a lot of words. His eye contact has been a big leap for him ... When you call his name, he's responding," she said.
She credits the sensory stimulation as part of Jordan's success.
"At CDC, it's the first time I've seen more progress and results as far as eye contact, interaction with others and wanting to try things. It's really helped him a lot," Kiessling said. "I give it five stars."
Gabriel Walter, 5, has been in the class since October and is preparing to soon graduate from Reaching Beyond Limits. His father, Joe Walter, said Gabriel has become more independent, his vocabulary has improved and he now forms whole sentences.
"We have come a long way. You can carry a conversation with him now. It just kind of happened overnight," Walter said.
Although he admitted to being skeptical about the program at first, Walter said the individualized attention is helpful.
"I'd recommend it for anyone," he said of the program. "It's just awesome."
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