Aged 11, Julie* came to Westmead Millennium Institute's Brain Dynamics Centre because she was experiencing life-threatening side-effects to the medication she took for attention deficit hyperactivity disorder (ADHD). Her mother Linda tells how a research study gave Julie new hope.
"My daughter Julie is a good girl. Like every child, she wants to be loved and she wants to be happy. But she faces so many challenges on her path to this simple goal.
"Julie was born with her tongue tied, could not eat properly, and I believe she was partially deaf. She underwent an operation when she was still a baby, just eight months old, to enable her to eat and chew, but remained developmentally delayed in both walking and speaking.
"ADHD is a chronic, debilitating disorder that can impact on children academically and socially. Julie's ADHD is compounded by Asperger Syndrome, a developmental disorder that further limits her social skills and makes it almost impossible for her to understand subtleties or abstract concepts.
"She is subject to fits of rage, panic if her routine is broken, and episodes of profound social withdrawal. She has severe auditory and learning problems, and will forget a comment or instruction only seconds after it has been made. My daughter's life is a daily struggle. She knows she is different, and refers to herself as 'an angel child' in the good times, and 'a devil bottom' when she feels she isn't coping.
"Our paediatrician prescribed medication for Julie when she was quite young. It calmed her behaviour but the side effects were severe and actually put her life in danger. Under the medication she refused to eat. Her weight plummeted to unhealthy levels and she was at risk of developing anorexia nervosa.
"I was at my wits' end when we were referred to the Brain Dynamics Centre at Westmead Millennium Institute to be part of a study that would test a non-stimulant alternative medication. These same researchers had previously discovered a biological basis for ADHD. That was incredibly important to me, because it meant paediatricians could use reliable tests to accurately diagnose Julie's disorder. It also gave them effective tools to support their decisions about Julie's medication.
"The new drug study was a godsend. Julie is calmer, happier, and eating again. It is a fundamental, critical life function for a child to eat, and the Brain Dynamics Centre gave this back to my daughter. "Researchers are the silent achievers of the medical world. They are so brilliant and it is wonderful to see the work they are doing."
*Julie's and Linda's names have been changed to protect this family's identity.
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Westmead Millennium Institute Brain Dynamics Centre
Attention deficit hyperactivity disorder (ADHD) is the most common psychiatric disorder in children and young people, affecting on average, at least one child in every classroom worldwide.
Continued problems with inattention and impulsivity remain in up to 60-80% of children with ADHD when they reach adulthood.