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What Are the Problems When PKU is Not Treated Effectively?

PROGRAM DETAILS:

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.

Click to here to view and print the Take Action Guide from this program.

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EXPERTS & GUESTS:
Georgianne Arnold, M.D.
Geneticist, University of Rochester Medical Center
Dr. Georgianne Arnold is a geneticist at the University of Rochester Medical Center and associate professor of pediatrics and genetics at the University of Rochester School of Medicine and Dentistry. Dr. Arnold's research interests are in phenylketonuria (PKU) and other metabolic Disorders. She received her MS degree from Indiana University in medical genetics followed by completion of a medical degree... more >

Virdette Brumm, Ph.D.
Neuropsychologist
Virdette Laura Brumm, Ph.D. is a clinical and research neuropsychologist. Dr. Brumm is currently involved in clinical research projects at the San Francisco V.A. Medical Center and California Pacific Medical Center. Her research focuses primarily on assessing the neuropsychological and neurodevelopmental effects of brain dysfunction on cognitive and behavioral functions in pediatric, adolescent and adult populations. She was an assistant... more >

Bridget Reineking, M.S., R.D., C.D.
Clinical Dietitian Specialist - Inborn Errors of Metabolism, Children's Hospital of Wisconsin
Bridget Reineking, MS, RD, CD currently serves as a clinical dietitian specialist at the Children’s Hospital of Wisconsin in Milwaukee, Wisconsin, where her focus is on inborn errors of metabolism. Ms. Reineking received her undergraduate degree in Dietetics from the University of Wisconsin-Madison, located in Madison, Wisconsin. She continued on to receive her master’s degree in Nutrition from Case Western... more >

Mary Brown M.S., R.D., C.D.E.
Clinical Metabolic Dietitian with PKU, Intermountain Healthcare
Mary is a registered dietitian and certified diabetes educator that has a unique interest in inborn errors of metabolism. She received her undergraduate degree in Biology from Southern Utah University, and her graduate degree in Nutritional Science from Brigham Young University. She was President of the Association of Diabetes Educators in Utah (ADEU) from 2008-2009. She has also been involved... more >

TRANSCRIPT:

  1. Introduction LISTEN
  2. Mary's Story LISTEN
  3. Genetic Aspects of PKU and the Consequences of High Phe Levels LISTEN
  4. Organizational and Emotional Challenges with Uncontrolled PKU LISTEN
  5. Questions from Listeners LISTEN

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