By Kristen Kridel, Special to the Tribune
February 27, 2013
Ten-year-old Francisco Steib rarely sits through an entire dinner at home. There's still food on everyone's plate when he starts to get fidgety and has to get up.
Francisco, a Lakeview resident who was diagnosed with attention deficit hyperactivity disorder 31/2 years ago, will walk around the table, move to another chair or at the very least stand by his seat, said his mother, Maggi Steib.
"For some people, that's a real challenge," Steib said. "They want their kids to be able to sit still, but he really cannot sit still. … He doesn't have control over it, and you as parents don't have control over it."
Two recent studies completed by one of the nation's largest not-for-profit health plans offer insight into ADHD, the cause of Francisco's difficulties and one of the most common neurobehavioral disorders of childhood.
Offering a piece of the puzzle why certain children get ADHD, the first Kaiser Permanente study reveals an association between the disorder and health complications that cause oxygen deprivation before birth. The second study suggests a rise in the rate of children being diagnosed with ADHD.
"We want to prevent even one adverse outcome," said Dr. Darios Getahun, researcher with the Kaiser Permanente Southern California Department of Research & Evaluation and lead author of the studies.
ADHD is defined as a cluster of two sets of symptoms, experts said. Some children with the disorder show signs of hyperactivity or impulsivity, such as fidgeting or moving excessively, interrupting conversations or grabbing items from others. Others suffer from inattention, such as difficulty following instructions or forgetfulness. Some have both types of symptoms.
In 2011, more than 5 million American children ages 3 to 17 had the disorder, according to the Centers for Disease Control and Prevention.
"When we see kids clinically who have had ADHD for many years, everyone has been suffering," said Dr. Mina Dulcan, head of Child and Adolescent Psychiatry at Ann & Robert H. Lurie Children's Hospital of Chicago. "One of the things people don't remember is kids and families with ADHD suffer. It's a real thing."
It's well known that the cause of ADHD is strongly genetic but also linked to brain development, experts said. While previous studies have shown that in-utero exposure to ischemic-hypoxic conditions — complications that deprive the brain of oxygen — often lead to brain injury and developmental problems, Kaiser Permanente's study published in Pediatrics journal shows children who experience prenatal IHCs have a 16 percent greater chance overall of developing ADHD.
The problem is that IHCs, such as birth asphyxia, neonatal respiratory distress syndrome and preeclampsia, can compromise the levels of oxygen and nutrients transported from the mother's blood to the fetus while the child's organs are still developing, according to the study.
Children born breech or transverse (shoulder first) or whose deliveries involved cord complications had a 13 percent increased risk of ADHD, according to the study, which involved analyzing the health records of almost 82,000 children ages 5 to 11.
Compared with children who were not exposed, those who experienced birth asphyxia, preeclampsia and neonatal respiratory distress syndrome faced a 26 percent, 34 percent and 47 percent greater risk, respectively, of developing ADHD, according to the study. The strongest connection was found in preterm births.
One benefit of this study is that it could help identify at-risk children earlier.
If treated at a younger age, "they will do better in school and socially," Getahun said. "That is very important."
Some experts, however, question whether putting the parents of children who suffered from IHCs on guard for ADHD truly is beneficial.
The disorder is easiest to diagnose around age 7, said Mark Stein, University of Illinois at Chicago professor of psychiatry and pediatrics and director of the Hyperactivity, Attention and Learning Problems Program. The further a child is from that age, whether it's older or younger, the more difficult the disorder is to diagnose.
All 2-year-olds have ADHD symptoms, he said. Sometimes those symptoms are nothing, and sometimes they are indicators of a more severe problem that might be overlooked if ADHD is assumed. In addition, medications used to treat ADHD don't work as well in younger children.
"I think it's important to be careful in diagnosing it, especially in younger children," Stein said.
In addition, parents should keep in mind that IHCs don't account for the large majority of cases of ADHD, Stein said.
Although the percentages in the study are significant statistically, the risk in the real world is actually quite small, Dulcan added.
"What I worry about is that parents who have had birth complications will worry more than they need to about their kids," she said.
Still, concern over ADHD is almost certainly increasing. The second Kaiser Permanente study, which examined health records of nearly 850,000 children between 5 and 11, revealed that the diagnosis rates for ADHD rose from 2.5 percent in 2001 to 3.1 percent in 2010. That's a relative increase of 24 percent.
Although white children had the highest ending diagnosis rate at 5.6 percent, it was a relative increase of only 20 percent, up from 4.7 percent in 2001, according to the study, which was published last month in JAMA Pediatrics journal.
Black children saw the greatest jump in diagnosis with a 70 percent relative increase, according to the study. The rates of black children diagnosed rose from 2.6 percent in 2001 to 4.1 percent in 2010, with the rates for black girls in particular increasing a whopping 90 percent.
The rates of diagnosis for Hispanic children showed a relative increase of 60 percent, jumping from 1.7 percent in 2001 to 2.5 percent in 2010, according to the study.
The study also showed that boys were three times more likely than girls to be diagnosed with ADHD. Considering that there used to be nine boys diagnosed for every girl, this shows a considerable decline in the ADHD gender gap, Stein said.
Because girls are less likely to be hyperactive or labeled as "disrupters" in school, traditionally they have been less likely to be diagnosed, Stein said.
"I think it's a good thing that more girls are being identified and more African-American girls in particular," he said.
Still, parents should not be concerned that the rise in the diagnosis rates suggests an "epidemic" of the disorder, he said.
According to the study, 4.9 percent of the children had a diagnosis of ADHD. That's no where near the high end of most other studies, which suggest 4 to 12 percent of children have ADHD, Stein said.
However, the researchers set a very stringent diagnostic criteria that could explain why the ADHD rates were lower in this study than others. For the Kaiser Permanente study, a child had to either be diagnosed on at least two occasions by specialized physicians or diagnosed once and receive at least two refills of ADHD medication.
Dulcan questioned certain aspects of the study. Although Kaiser Permanente noted the study could be generalized to other populations because it examined a large and ethnically diverse group, Dulcan said the fact that everyone in the study had access to top-of-the-line health care meant it could not be generalized to the American public.
Still, previous studies confirm that the diagnosis rate of ADHD is and has been on the rise in recent years, experts said. The jump in ADHD diagnosis is likely due, at least partially, to an increased awareness about the disorder.
Certainly there is more awareness about ADHD on the part of pediatricians, Stein said. Patients used to have to go to psychiatric facilities for diagnosis and treatment, but now it's just as common to seek help from primary care physicians.
More adults are also being diagnosed, said Dale Davison, co-coordinator of the Chicago North Shore CHADD, an ADHD support group, and a professional ADHD/executive functioning coach. As they seek help for their children with ADHD, many adults are realizing they also suffer from the disorder.
"There are lots of people who are adults now who have had ADHD their whole lives, but they never realized it," Davison said.
Maggi Steib was doing research on ADHD to learn more about her son's situation when she recognized many of the symptoms in herself, she said. She was diagnosed with attention deficit disorder a few years ago.
Also having the disorder gives her a little more empathy, but it doesn't mean her son's condition isn't a major challenge, Steib said.
Possibly the most difficult task is grasping what ADHD is and making sure to cut her son some slack, she said. In those moments when she is calling his name over and over again without a response, it's hard not to be hurt and frustrated.
"I think one of the biggest challenges is just reminding ourselves that he's not acting out," Steib said.
Steib said she's gradually picked up tips that seem to help. For instance, she now knows she's not going to get Francisco's attention by calling to him from another room. She has to go to his location and make eye contact.
Impulsivity is another big issue, Steib said. For example, Francisco was playing tag with another child and that child accidentally struck him. Immediately, Francisco turned and hit him back without thinking about it. Afterward, he felt horrible.
ADHD medication does a good job helping to stave off some of that impulsivity, Steib said. It gives her the chance to work with her son and teach him coping strategies.
Still, sometimes parents need more help, Steib said. That's why she started the Chicago ADHD Parent Support Group in December.
"I was just looking for support as a parent," she said.
Turnout has been amazing, she said. Fifty people have joined the group online and about 30 have shown up at each monthly meeting.
She said it is encouraging to hear other people's stories and see a room full of people nodding their heads.
"It's so easy to feel isolated as a parent and feel like you're dealing with whatever you're dealing with on your own," Steib said. But "they know exactly what you're going through."