Newborn Screening Case Management

Phenylketonuria (PKU)

What is Phenylketonuria?

En Español ¿Que es la fenilcetonuria?

NIH Consensus Panel Recommends Comprehensive Approach to Life Long Care for PKU People with the rare metabolic disorder phenylketonuria need to adhere to the special diet central to their treatment, concluded a Consensus Panel convened by the National Institutes of Health. The conclusion addresses a long-standing difference of opinion about whether people with phenylketonuria could abandon the diet after early childhood.

Application for Formula Assistances

If you are a resident of the State of Texas and not eligible for private insurance, CSHCN, Medicaid, WIC, or CHIP, you may be eligible for financial assistance with PKU formula. Please complete the Application for Assistance with Metabolic Formula in Word or PDF (8KB) and mail to:

Newborn Screening Program
Texas Department of State Health Services
1100 West 49th Street M-555
Austin, Texas 78756
MC 1918
Attn: Metabolic Consultant
Fax: 512/458-7593

Literature:

A Teacher's Guide to PKU
The Young Child with Mild Hyperphe
The Child with PKU
A Babysitter's Guide to PKU (PDF)

PDF files must be viewed/printed with Acrobat Reader.

Maternal PKU:

Maternal PKU: A need for early identification

The Young Woman with PKU

The Young Woman with Mild Hyperphe

Maternal PKU Related Sites:

Maternal Phenylketonuria-American Academy of Pediatrics

The International Collaborative Study on maternal phenylketonuria: organization, study design and description of the sample

Outcome implications of the International Maternal Phenylketonuria Collaborative Study (MPKUCS):1994

Metabolic University - The Children's Hospital of Denver PDF (181KB)
February 2-6, 2008

Camps:

Camp Phever
Cathleen Connolly, RD, CSP, LD
713-500-7098

Kids Corner:

Meet Caroline and Elizabeth
Denny the Dragon and his Magic Milk Coloring Pages
Denny the Dragon Slider Puzzle
Guthrie Scholarship

Texas PKU Connections Newsletter:

Winter 2003 (Vol. 7)

Winter 2001-02 (Vol. 6)

Summer 2000 (Vol. 5)

Fall 1999 (Vol. 4)

Winter 1998-99 (Vol. 3)

June 1998 (Vol. 2)

November 1997 (Vol. 1)

Pediatric Metabolic Consultants

Newborn Screening Literature:

Publications
Rules

Related Sites:

Texas Insurance Code - CHAPTER 1359. FORMULAS FOR INDIVIDUALS WITH PHENYLKETONURIA OR OTHER HERITABLE DISEASES
Unified to Support Metabolic Disorders (USMD), Inc. is dedicated to helping children, adults and their families who are affected by rare genetic metabolic disorders such as PKU, Homocystinuria, Maple Syrup Urine Disease, Tyrosinemia, Organic Acidemias and Urea Cycle Disorders. STAPAD hopes to create a community in which those affected by these disorders can find friendship and support. We are united in helping to facilitate metabolic research, advocate for medical formula/food coverage, provide educational resources and generate awareness in the community.
A new PKU-Portal using a professional Forum-software. We are building a big PKU-Community having people form everywhere arround the world. There are features like a catogized link-archive or a database for articles about PKU. On the Board you can search for things / products, ask questions about PKU, talk about articles / new inventions, just chat to other PKUs, discuss your problems or look for new recipes in our recipes-section and loads more.
National Coalition for PKU and Allied Disorders is a nonprofit organization comprised of individuals, metabolic support groups and professionals directly involved with issues related to errors of metabolism requiring low protein diet, including PKU, MSUD, HCU, the OA's, UCD's and Tyrosinemia.
Children's PKU Network - The Children's PKU Network was founded in 1991 to address the special needs and concerns of individuals with phenylketonuria (PKU) and their families.
Search the USDA Nutrient Database for Standard Reference - This interface allows simple searches. Enter one keyword which best describes your food item or the NDB No and press the enter or return key.
Does Your Child Need a Special Diet? - The Rehabilitation Act of 1973 and the Americans with Disabilities Act, as well as the U.S. Department of Agriculture's Civil Rights regulations (7 CFR 15b) require schools to make accommodations for children who are unable to eat the school meal as prepared because of a disability.
National PKU News - National PKU News is a non-profit organization located in Seattle, Washington. It is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria.
PKU Organization of Illinois - The PKU Organization of Illinois is a not-for-profit membership organization for the benefit of patients and families. The organization was founded in 1969. The primary focus is education and support for our member families.

Please note: External links to other sites are intended to be informational and do not have the endorsement of the Texas Department of State Health Services. These sites may also not be accessible to persons with disabilities.

Last Updated November 5, 2007