To Laura Collins, ADHD was like an invisible force that controlled her daughter.
As a toddler, Lassha Pafford couldn’t sit still. She ran so fast and her coordination was so poor that she ran into walls. In elementary school, her grades were low, even though an evaluation confirmed a high intelligence. She sometimes got into fights at school and frequently had meltdowns. Finally, Collins’ desperation peaked when Lassha became so agitated that she sat in a corner screaming, begging her parents to help her stop.
At the same time, Collins and her husband, Thomas Pafford, were adjusting to a move to Miami from Durham, N.C., and raising their two other children. Lassha, now 9, Liam, 10, and Kieran, 6, are all adopted. She recalls asking one medical professional, “How do people survive this?”
Less than a year later, Lassha, a third-grader at David Fairchild Elementary, is on the honor roll, and her behavior has improved significantly.
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“She’s been on honor roll all year. She’s been on behavior honor roll all year,” Collins said. “That’s never, ever, ever happened before. Now it’s like old hat.”
What happened? Collins says the difference was her family’s participation last year in the Summer Treatment Program (STP) at Florida International University’s Center for Children and Families. An intensive eight-week, all-day program, STP is available to a range of children from pre-schoolers (ages 4 to 6) to adolescents entering high school in the fall. The summer program also is treating children with autism and Asperger’s syndrome ages 2 to 6. Most children in the program participate in ADHD research.
Through the summer program, Lassha was part of the first year of a five-year study funded by a $3.75 million grant from the National Institutes of Health (NIH). The goal is to determine whether children with ADHD (attention deficit hyperactivity disorder) ages 5 to 12 who are taking stimulant medications, including Concerta and Adderall, will develop tolerance over a short time during the summer. The study, which will monitor 250 children over four consecutive years, is also attempting to determine whether taking weekend breaks from the medication will allow the drugs to keep working over time.
The program has completed the recruitment process for students for the summer program, the second year of the study, which will begin Monday. The third edition of the study will begin next year. Cost is determined on a sliding scale — for eight weeks, $800 to $4,600, depending on household income. Scholarships are available.
Lassha’s doctor, Dr. Jeffrey Brosco, professor of pediatrics at the University of Miami Miller School of Medicine and associate director of UM’s Mailman Center for Child Development, referred her to the program. Collins admits her expectations were low, as she had tried many strategies after Lasha was diagnosed with ADHD.
While the strategies helped somewhat, Collins said none gave the family and Lassha the tools to manage the disorder. Collins tried occupational and physical therapy, joint compression massage and brushing her arms and legs with a soft brush. She removed artificial food coloring and most processed foods from Lassha’s diet. After Brosco prescribed a low dose of medication, she saw great improvement, but tantrums and other behavioral problems persisted.
Brosco, whose department deals with complex behavioral cases, says he continues to send patients to the program because the approach is backed by solid research, and it works for most families.
“The FIU program is a nationally and internationally recognized group of researchers and clinicians and a valuable resource to our community,” Brosco said. “For the families who are able to get into the program, it’s a really wonderful option.”
Its unassuming director, William E. Pelham, Jr., Ph.D., who is the chair of the department of psychology, is a national figure in the field, along with Jim Swanson, professor emeritus at the University of California Irvine, who came to FIU as a part-time professor of psychiatry in 2010, specifically to work on research with Pelham. They have together and individually contributed to advancements in the study and treatment of ADHD over the past 30 years, including developing the popular ADHD drug Concerta.
Pelham, who had been running an ADHD program and summer camp at State University of New York (SUNY) in Buffalo for 14 years, was recruited by FIU in 2009 to establish the center. He moved the program to FIU in 2010. With a staff of 35, the center holds about $38 million in federal research grants and works with nearly 1,000 families per year.
It was Pelham, Swanson points out, who first developed the treatment program in 1980 as a professor at Florida State University. Recognized as one of the best, it has been duplicated across the country, including at the University of California Irvine, and in Japan.
“I was so impressed that I asked Bill to help me implement a similar program at UC Irvine, and he spent a mini-sabbatical to help me ,” Swanson said.
The tolerance study addresses a core question: Is the medication working? Pelham said he suspects tolerance could be developing quickly, because during a previous landmark NIH study “we had to increase the dose to have the same effect over the course of the school year.” While the child’s growth and weight are also factors, so is the issue of tolerance, he said.
“And the question for the school year is are the children who are on the five-day-a-week regimen, do they end up on lower doses of medication? Because if that disrupted tolerance they shouldn’t need as many dose adjustments.”
“Simple idea, and a simple study,” Pelham said, “but it could have enormous implications.”
For parents whose children are part of the study, such close monitoring by professionals provides a wealth of information about their children’s performance with medication and without, in addition to training children to regulate their behavior and training parents on how to best handle their children.
According to the Centers for Disease Control and Prevention, about 11 percent of children ages 4-17, some 6.4 million, have been diagnosed with ADHD as of 2011. Rates were far higher for boys at 13.2 percent, compared with 5.6 percent for girls. According to survey estimates for 2011-2012, 7 to 9 percent of Florida children have an ADHD diagnosis.
“The research is pretty clear that children who have ADHD and do not receive proper treatment overall do much worse. They are children who are much more likely to drop out of school, be involved in the criminal justice system, become pregnant or have children before they’re ready, get in car crashes and abuse substances,” he said. “One of the most important things we can do for our society is treat this condition.”
Pelham agrees but is concerned that the most effective treatment may not be understood by parents or is not available to them.
“The biggest problem with behavioral treatment is that it costs a lot of money,” he said. “The biggest problem with medication is the dose, because of side effects, tolerance and disruption of growth.”
His program combines medication and behavior modification, plus parent training, which his research has found to be far more effective than either medication alone or behavior modification alone. The program teaches parents to work with their children at home, while helping teachers develop a school environment that allows the child to learn and behave better. Clinicians work with teachers to develop a daily report card, which motivates and rewards good behavior and addresses issues that may cause poor behavior.
Too many parents, and often the medical community, focus only on medication to treat ADHD, Pelham said. While monitoring is an important component of treatment, it is often almost nonexistent, he said.
“That’s what happens way too often. Some physicians, because of their training, only know how to do medication. The standard for medication monitoring is you see them for 10 minutes, ask about side effects. They might ask the parent do you think it’s helping? Do you think we ought to go up in dose? They don’t have a good sense of it, because they haven’t talked to the school. So that’s a bad way to do it,” he said.
“Our lab has done more work on that than anybody else in the world. I personally don’t think medication is enough for anybody. They all need something else,” Pelham said.
“I think of it as sort of a three-legged stool. One is what you do with the child, second is what you do with the environment and third is medication. I tell parents that medication doesn’t fix the problem; it provides a bridge. It helps things go better until such time the child’s coping skills improve and you get the environment to match his or her skill set,” Brosco said.
Teaching parents how to help their child cope is critical, they say.
“You need to teach parents the skills that make them better parents,” Pelham said. “There’s a specific set of things that you can do to teach parents to be better with ADHD kids. It’s the same skills that work with kids with Asperger’s, autism, anxiety, conduct problems, they’re all similar sets of skills.”
Those strategies include attention and rewards for good behavior, “planned ignoring” of bad behavior, timeouts and point systems. Collins said while she knew about some of the parent training approaches, knowing and applying them to your child and busy household consistently are two different things. She said she now uses the same skills for all the children, and it has transformed her household.
“They would teach us how to apply it to your situation, knowing our children, and you get feedback for your specific situation,” she said. “We [parents] did role plays in small groups. And they had child care.”