One Year of Performing Assessments of Kids with CHD

In 2018, the Cardiac Kids Developmental Follow-Up Program (CKDP) expanded its services to address the needs of school-age children with a history of congenital or acquired cardiac conditions, given the increased risk of learning disabilities and attention-deficit/hyperactivity disorder (ADHD) in this patient population. The CKDP program provides ongoing long-term monitoring of and access to medical services as children advance through elementary school and beyond. The program helps children and families access developmental testing, care and management recommendations.

Children with congenital heart disease (CHD) are three to four times more likely to be diagnosed with ADHD than the general population. There is also an increased risk of learning issues, including specific learning disabilities in math or reading, and of autism spectrum disorder. Many of these conditions do not present until a child reaches school age, when they may become more evident in a classroom setting or when learning, behavioral, and social demands increase.

Multi-disciplinary evaluations of children with CHD

One year ago, Kate E. Wallis, MD, MPH, from the Cardiac Kids Developmental Follow-Up Program, began seeing patients for multi-disciplinary evaluations in conjunction with CKDP’s Co-director and neuropsychologist, Lyla Hampton, PhD. Since that time, they have evaluated nearly 20 school-age children for ADHD, learning disabilities, autism spectrum disorder, anxiety, and co-morbid medical issues that may affect a child’s development and learning. Children range in age from 4 to 12 years. Assessments generally consist of neuropsychological testing completed by Dr. Hampton (including evaluations for ADHD and learning disabilities, or for autism spectrum disorder when appropriate), review of medical history and of any prior assessments completed by another provider or the child’s school, physical examination, and review of behavioral rating scales completed by parents and teachers. They have consulted closely with each patient’s primary cardiologist to tailor treatment recommendations, including medications to treat ADHD when needed.

Untreated ADHD can impact a child’s educational, personal and social development. Therefore, they advocate for treatment when a child meets criteria for ADHD, in the form of classroom and behavioral modifications and therapy, and medications when indicated. While many parents and doctors are hesitant to start ADHD medications in children with a history of CHD, Dr. Wallis consults closely with the child’s cardiologist to evaluate the safety of starting medication in each child with ADHD, and to determine if additional monitoring, such as an EKG or a Holter monitor, is required after starting or adjusting any medications. They also monitor closely for side effects, including making sure the child is not experiencing any cardiac symptoms, such as fainting, palpitations, or chest pains, and is growing along their growth curve, as many of the ADHD medications can affect appetite and weight.

They also talk to families about some of the myths that persist about ADHD. For example, some people continue to believe that children with ADHD may become addicted to medication. However, studies have shown that children with ADHD are less likely to have substance abuse over time if they receive adequate treatment. Additionally, there are myths about overmedicating for ADHD. But research has shown that for children who are struggling at home or school with attention and focus, treatment is a crucial component to allowing them to optimize their learning, development, and achievement of self-esteem when they are able to feel successful. 

For children who have identified specific learning disabilities, Drs. Wallis and Hampton help families request an Individualized Education Plan (or IEP) from the child’s school. Some children require specialized instruction, tailored to their learning profiles, and/or specific therapies, such as speech/language therapy or occupational therapy to address particular delays or concerns. They help families obtain these services when indicated and encourage them to share their findings with schools, multi-disciplinary teams, and outside therapists.

If interested in learning more about the Cardiac Kids Developmental Follow-Up Program, please call 267-426-8186.