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As Katy Ward reads the newspaper each morning, she watches for new developments on ADHD. And while there have been many advances in her 10-year-old son's condition, the Laguna Beach family, like thousands of other households nationwide, continues to wait for the one that will rid the burdens of their child's disability. "I don't think many people realize how intense and enduring dealing with ADHD is," she says. "It means making the extra effort on a daily basis, all week long, all year round. There is no break from it. It drains your energy, your wallet, and your patience, but you keep at it because your child's future is at stake." Despite several findings and improvements in the last few years, many children, such as Katy's son Connor, continue to struggle. Homework assignments can take twice as long to complete. Friendships and self-esteem suffer. Tutoring and therapy become routine. And a sense of isolation, which stems from the attached stigma, often weighs on the entire family. "It's sort of like you're in your own universe," says Katy's husband, Tim. "And as far as your neighbors are concerned, there's just something not right with you. 'You're not doing a good job with those kids.' That's what you face." While issues surrounding ADHD today greatly mirror those seen in the previous decade, several advances have brought some relief to families affected by the disorder. Most notably, they have been in the areas of emerging scientific data, improved diagnostic procedures and refined treatment. Defining ADHD Defined as a neurobiological disorder, the condition is characterized by excessive physical activity, impulsive behavior, and an inability to focus. According to the National Institute of Mental Health, Attention Deficit Hyperactivity Disorder (ADHD) is the most commonly diagnosed childhood disorder. Between 3 to 5 percent of school-aged children are affected, with the condition occurring three times more often in boys than in girls. Other estimates put the prevalence rate at twice as high. Left untreated, the disorder can have both damaging and far-reaching effects. According to the World Federation for Mental Health, which launched international guidelines last September to help combat misinformation, adolescents with the condition are more likely to drop out of school, rarely complete college, have fewer friends and infrequently participate in social activities. For the 60 percent of children whose symptoms persist into adulthood, job performance problems and relationship issues seem likely. The late ’90s Originally coined in 1980 as Attention Deficit Disorder (ADD), and later redefined as ADHD, a series of headlines - including Newsweek's haunting "Mother's Little Helper" - brought the condition to the forefront a decade ago. Increasing numbers of cases - a Scott-Levin Physician, Drug and Diagnosis Audit reported individual cases increased from about 1 million in 1990 to more than 2 million in 1994 - prompted some to label this the "trash can" diagnosis of the '90s. In some cases, this was, and remains, true as a few parents too quickly seek a remedy for a child who is simply exuberant. Accusations of bad parents seeking medication as a quick fix for misbehaved and lazy offspring, and a number of doctors ready to abide, became so loud that the Council on Scientific Affairs and American Medical Association conducted a study to research the claims. Released in 1998, the study concluded that while children indeed fell within this realm, "there is little evidence of widespread overdiagnosis or misdiagnosis of ADHD or of widespread overprescription of methylphenidate (a popular medication used to treat the condition) by physicians." The late Lake Forest-based educational psychologist Bunni Tobias would likely disagree. Tobias said in a 1997 interview with OC Family Magazine's sister publication, OC METRO, that "look-alike" conditions accounted for more than 90 percent of the ADHD referrals she received. In response to misdiagnoses, Tobias developed a tape series, "ADHD Look-Alikes, Other Reasons Children Flit, Squirm Distract and Just Space Out!" to educate parents and professionals about mimicking conditions. The eight look-alikes included in the series are: auditory and language processing, sensory motor integration, vision development, sensitivity, allergies, nutrition, behavior and stress. Such conflicting information continues to surface today. One recent report, for example, cautions about the increased use of medications in young children. Another claims that parents are withholding treatment for fear of cruel labels. Add in the varying opinions that surround the area of medication and it's easy to see how parents whose child has been diagnosed with the disorder could feel as if they are caught in the middle of a tug of war. Scientific discoveries Biological research, such as brain imaging and genetic studies, represents one area that has helped diminish the controversy. Previously, some had doubts about whether or not ADHD is a biological concern. Among the numerous headlines in the last few years: • A specific defect in dopamine production in adults with ADHD has been identified; • Brain differences are found in ADHD kids, specifically the levels of glutamate are increased while GABA, a nerve inhibitor, is decreased; • Overall brain size is generally 5 percent smaller in affected children than in children without ADHD. Research also shows a genetic link to ADHD. Connor's twin brother, Brendan, for example, has a learning disability. And his grandfather and aunt had ADHD. According to the National Institute of Mental Health, children with ADHD usually have at least one close relative who also has the disorder. At least one-third of all fathers who had ADHD in their youth have children with the disorder. And when one twin of an identical twin pair has the disorder, the other is likely to have it as well. "It helps take down the sense of blame which is put on the family," says Marc Lerner, a developmental and behavioral pediatrician and clinical professor of pediatrics at UC Irvine Medical Center. "I think there has always been a tendency for people to say, 'Gosh, this is a reflection of poor parenting. If you had done your job, your child wouldn't be having these difficulties.' And so although we don't do genetic tests and we don't do brain scans in general for individual children to make a diagnosis and to plan a treatment, I do think that it's taken away the stigma." Scientific discoveries, important as they are, make little difference in the daily life for children like Connor. Instead, the biggest relief for him has been through longer-acting medications. What works now Like many other parents - nearly half of all affected families, according to Lerner - Tim and Katy tried other interventions before putting their son on meds. Among the exhaustive list of treatments: speech therapy, tutoring, supplements, auditory processing therapy, diet changes, relaxation techniques and a host of others, most of which are not covered by insurance. The couple have collected so much information through workshops and seminars that they now have their own mini library. Despite these efforts, Connor's condition continued to worsen. Today, he is among a growing number of children who benefit from new and improved medications. Among the biggest breakthrough is the use of longer-acting medication, which has eliminated the need for in-school and after-school dosing. Its also rids children of the dips they experience during the day as shorter-acting versions begin to wear off. "The medications are so much more appropriate because of the issues of compliance and effectiveness, not because the chemical is different, but because it's actually there when it needs to be," says Lerner. "These kinds of medications now have assumed over 75 percent of the market. "Now a child can take medicine in the privacy of their own home and the parents don't have to run after the child multiple times. Teachers aren't going to say in front of the class, 'Did you remember to go get your medicine,' and embarrass the child." Today's popular medications include Concerta and Adderall. Concerta, which contains methylphenidate, the same stimulate found in Ritalin, is one of the newest reformulated ADHD medications to appear on the market and is the longest acting (12 hours). It was approved by the FDA in 2000. Adderall, which combines four drugs from the amphetamine family, has been around for about 20 years. It received approval from the FDA in 1996 for use in the treatment of ADHD. And in 2001, an eight-hour version was approved. Ritalin also now comes in a long-lasting form as well. Increased attention is also being given to the use of non-stimulants. Strattera (atomoxetine), a non-stimulant, is the first new drug in three decades for treatment of ADHD. It too is administered once a day. The use of medications, however, continues to be closely scrutinized. Among the greatest areas of concern today is the growing use of psychotropic medications in young children. According to a report, published in 2000 in the Journal of the American Medical Association, 12 percent of the preschool-aged children at one study site, which consisted of more than 146,000 enrollees ages 2 to 4 years old, were taking a stimulant. During a five-year span (1991-1995), the prevalence of methylphenidate use in this group increased threefold. Options among the medical community differ greatly on this form of earlier intervention, says Lerner. Some professionals believe an earlier, more aggressive approach greatly reduces the difficulties a child encounters when he or she enters school. Others contend that it's child abuse to give brain-influencing medication at an age when the brain is still developing. UC Irvine is one of several sites that is currently involved in a national study to determine the potential risks and potential benefits in using medication as a treatment option in young children. The results, however, will not be available for a few years. New resources To assist parents of preschoolers with early ADHD, as well as those with challenging behavior, UC Irvine and Children's Hospital of Orange County offer a free 10-week, behavior modification program, called CUIDAR for Attention and Learning Program. The program is designed to help parents recognize whether a preschooler fits the pattern of normal development so any behavioral, attention or learning problems may be identified and addressed before elementary school. Several sessions are offered throughout the county. "Part of reason we put together this program for parent training in the county is we felt that part of what drives families to the use of medication early on is the absence of appropriate behavioral treatment options at that age," says Lerner. "Our goal was to really change the way parents and children interact early to avoid the frustration and the negative feedback cycle which sometimes occurs because of a child's activity level or attention span." Diagnostic guidelines Children who have been newly flagged as having the disorder are likely to benefit most from the advances made in the area of diagnoses. As with psychiatric disorders, there is no single test to diagnose ADHD. Instead, a diagnosis is based on history and observable behavior. Today, evidence-based medicine is now being applied to decisions in diagnoses and treatment. UC Irvine, for example, participated in a national study in the late '90s that compared the effectiveness of behavioral treatment to treatment with medications to combined treatment. Among the findings, says Lerner, the study found that kids with ADHD who are anxious tend to respond equally well to behavioral treatment as to medications. Children who had more disruptive behavior and co-existing conditions, on the other hand, responded best to medication. Scientific, randomized studies such as this helps professionals to advise families when they look at choices for treatment. In addition, the American Academy of Pediatrics has released both a diagnostic guideline (2000) and a treatment guideline (2001). The American Academy of Child Mental & Psychiatry has established guidelines as well. These tools also help to establish a standard of care for physicians who are managing ADHD. Struggles continue While children who are mildly affected by the disorder tend to fare relatively well with treatment, difficulties remain for those who are moderately or highly affected. "You think, 'I thought if they got their meds, they'd be OK in school,' but it doesn't mean that," says Katy. "It still means that they have problems but they are able to understand better and concentrate longer but it's not going to cure it. They're still going to have problems in school." Connor, for example, is still tutored twice a week by a specialist in learning disabilities. In order to get a jump on his homework, he receives assignments on Friday rather than on Monday like the other kids in his class. He also sits in the front of the class where he is less distracted. His parents also keep him involved in activities to help his self-esteem. Mostly recently, Connor, who loves and excels in sports, recently began playing the saxophone. And Katy continues to scour the newspaper day to day in hopes of finding the ultimate breakthrough: "A supplement - that's not a drug - that a child could take and would fix the problem so that Connor could be like everybody else and not feel so different." Sandy Bennett is associate editor for Churm Publishing, Inc. Signs and symptoms A child with ADHD often shows some of the following: • Trouble paying attention • Inattention to details and makes careless mistakes • Easily distracted • Loses school supplies, forgets to turn in homework • Trouble finishing classwork and homework • Trouble listening • Trouble following multiple adult commands • Blurts out answers • Impatience • Fidgets or squirms • Leaves seat and runs about or climbs excessively • Seems "on the go" • Talks too much and has difficulty playing quietly • Interrupts or intrudes on others - Source: American Academy of Child and Adolescent Psychiatry Resources • Children and Adults with Attention-Deficit/Hyperactivity Disorder: www.chadd.org • National Resource Center on AD/HD (a program of CHADD) www.help4adhd.org • American Academy of Child and Adolescent Psychiatry: www.aacap.org • National Institute of Mental Health: www.nimh.nih.gov • The CUIDAR for Attention and Learning Program: 714.824.2462 |
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