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So you think your Phe is under control, but how can you tell when it’s not? Do high Phe levels affect your ability to recognize changes in behavior? Is it harmful for Phe levels to be too low? In this program you will hear from a dietitian, a geneticist, a neuropsychologist, and a woman living with PKU who is also a dietitian. The guests will share tips for treating PKU effectively and with consistency and discuss the challenges of staying on diet, advice for recognizing changes and what can be done about them.
Mary Brown is a dietitian at Intermountain Healthcare in Cedar City, Utah. She was born with PKU in the 1970s, and has been on diet since she was four days old. Mary shares her feelings on Phe levels and notes that she is better at managing stress when her Phe is lower. You’ll also hear about her family history with PKU, and how her two sisters, born in the 1950s, received a late diagnosis.
Watch Mary’s Powerful Patient video, here.
Dr. Georgianne Arnold then joins the program. Dr. Arnold is Director of the Metabolic Clinic at the Golisano Children’s Hospital of the University of Rochester Medical Center. She discusses the genetic aspects of PKU and provides an explanation for why some siblings have PKU, while others do not. Dr. Arnold also helps to explain the consequences of high Phe levels, as well as too low Phe levels.
You’ll also hear from Dr. Virdette Brumm, a neuropsychologist from Monterey, California. She helps listeners to understand the cognitive effects of elevated Phe levels. Dr. Brumm explains the effects on “executive functioning” as well as the effects on mood and emotions.
Early in the program, Bridget Reineking, a dietitian at the Children’s Hospital of Wisconsin, speaks about the need for tight Phe control and how lack of control can affect many aspects of your life. She provides examples of people who have returned to diet and the positive effects of this that have changed their lives. All of these experts provide a unique perspective and help to piece together this sometimes puzzling condition. Listen now to learn more about how to treat PKU effectively.
Guests:
Georgianne Arnold, M.D., Geneticist, University of Rochester Medical Center
Virdette Brumm, Ph.D., Neuropsychologist
Bridget Reineking, M.S., R.D., C.D., Clinical Dietitian Specialist - Inborn Errors of Metabolism, Children's Hospital of Wisconsin
Mary Brown M.S., R.D., C.D.E., Clinical Metabolic Dietitian with PKU, Intermountain Healthcare
