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Long Term Safety of Medications for PKU

PROGRAM DETAILS:

Up until very recently, PKU has been treated solely by eliminating phenylalanine from the diet. With new medications becoming available, and in some cases changing lives, long term safety of these medications is a concern. Joining Andrew for this live program is Dr. Barbara Burton, Professor of Pediatrics at Northwestern University's Feinberg School of Medicine and Director of the PKU Clinic at Children's Memorial Hospital in Chicago. Also joining us the broadcast is registered dietitian, Heather Bausell, who works closely with Dr. Burton. You’ll also hear from Josh Bigham, a teen living well with PKU and his mother, Marsha.

The program begins with Josh and his mother discussing how they have dealt with PKU. Josh was diagnosed as an infant and Marsha talks about the challenges she faced when he entered school. As Josh grew, low protein foods no longer filled him up, so he began eating smaller portions of foods with phe, hoping that this would still keep his levels low. Last year Josh was able to participate in a study at Akron Children’s Hospital, after a three-day study on a new medication, Kuvan, his phe levels were extremely low. He began introducing different foods and, today can follow a regular diet while continuing to take Kuvan.

Dr. Burton helps listeners to understand exactly how Kuvan works. She talks about the benefits and risks of both the medication and the low-phe diet. Ms. Bausell shares her perspective as a dietitian, the importance of avoiding nutritional deficiencies, how those with PKU are affected on different levels and what her thoughts are on this new medication. Both Dr. Burton and Ms. Bausell address a variety of listener questions ranging from pregnancy and side effects to monitoring phe levels. Listen to this program to hear about the latest research, new advances and what the future holds for the treatment of PKU.

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EXPERTS & GUESTS:
Barbara Burton, M.D. Barbara Burton, M.D.
Clinical Geneticist and Director of the PKU Clinic, Children's Memorial Hospital
Dr. Barbara Burton is a Professor of Pediatrics at Northwestern University’s Feinberg School of Medicine and Director of the PKU Clinic at Children's Memorial Hospital in Chicago. Dr. Burton received her medical degree from Northwestern University Medical and went on to complete her pediatric residency and fellowship in genetics at Children’s Memorial Hospital. Dr. Burton’s major clinical and research interests... more >

Heather Bausell, R.D., L.D.N.
Registered Dietitian, Division of Clinical Nutrition & Genetics, Children's Memorial Hospital
Heather Bausell, R.D., L.D.N., is a Metabolic Dietitian and Study Coordinator at the Children’s Memorial Hospital in Chicago, Illinois. She conducts nutrition assessment and counseling for children and adults with metabolic disorders. Ms. Bausell received her bachelor of science degree in Dietetics from the University of Illinois, Champaign. She completed a Dietetic internship at the Medical University of South Carolina,... more >

Josh Bigham,
Teen Living Well with PKU
Josh was diagnosed with PKU as a newborn. Maintaining his diet was easy as an infant and toddler but when he began attending school, it became more difficult. As he grew, fruits, vegetables and other low-protein foods did not fill him up and he began eating small portions of foods containing Phe. Over time he experienced short-term memory loss and... more >

Marsha Bigham,
Mother of teen with PKU
more >

TRANSCRIPT:

  1. Introduction LISTEN
  2. Perspective on Side Effects LISTEN
  3. Indications for Starting Kuvan LISTEN
  4. Questions from Listeners LISTEN

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