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Maternal PKU Mentoring Program

An introduction to the pilot. Maternal PKU Mentoring Program. Disclosures . We have no conflicts of interest to disclose. Kea S. Crivelly, MS, RD, LDN. Metabolic Nutritionist Hayward Genetics Center Tulane University School of Medicine New Orleans, LA kcrivell@tulane.edu Mom to Gabriel.

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Maternal PKU Mentoring Program

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  1. An introduction to the pilot Maternal PKU Mentoring Program

  2. Disclosures We have no conflicts of interest to disclose

  3. Kea S. Crivelly, MS, RD, LDN Metabolic Nutritionist Hayward Genetics Center Tulane University School of Medicine New Orleans, LA kcrivell@tulane.edu Mom to Gabriel

  4. Kerry Lewendoski

  5. What factors are needed for a successful PKU Pregnancy? • Dietary control • Formula • Treatment as directed by members of the pregnancy team • Good support network • What else?

  6. Pregnancy Team • Geneticist • Dietitian • Ob/Gynor Midwife • Maternal Fetal Specialist (potential) • Reproductive Endocrinologist (potential) • Lab/phlebotomist The pregnancy team may vary for each individual

  7. What is needed to return to diet? • Social support • Positive attitudes • Finding a routine that works for you (Finkelson et al 2001). • Ability to forgive yourself

  8. A Mentor • A trusted peer who shares knowledge, skillsand experience with another needing direction in Maternal PKU and pregnancy. The mentor will be an extra set of eyes and ears to encourage and promote communication between the mentee and her pregnancy team.

  9. The Maternal PKU Mentor • Has PKU • Has had a pregnancy • Knowledgeable in PKU and pregnancy • Able to educate others • Helps others with their experiences • Certified MPKU Mentor by NPKUA

  10. A Mentee • Someone who seeks advice, support and learning through a relationship with someone else who has greater experience in what they hope to accomplish

  11. The Maternal PKU Mentee • Woman with PKU of child bearing age • Referred by clinics • Any stage of conception • Pre-pregnancy through post-partum Woman seeking support system

  12. Goals of the relationship • Establish Trust • Education • Provide resources • Support • Communication

  13. Pilot Program • 5 initial clinics across North America • Certified MPKU Mentors • Goal to mentor 20 women in first 2 years

  14. Mentoring Timeline • Pre-conception • Throughout pregnancy • Post-partum support • Subsequent Pregnancies

  15. Goals of the program • Increase the education of Maternal PKU • Help women complete successful healthy pregnancies • Increase self-esteem in women with PKU • Provide peer support during PKU pregnancy

  16. SMART Goals Specific Measurable Attainable Realistic Timely

  17. Short term goals • Motivate • Educate • Communicate

  18. Success Is A Great Motivator

  19. Your Experiences?

  20. Questions?

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