1. 7 BEING YOUR CHILD’S ADVOCATE

2. What Is An Advocate?

3. Interesting Research

4. 6 Skills to be an Effective Advocate

5. Becoming Informed

6. Learn the Rules of the Game

8. Example Standard of Care for Children with Galactosemia This is an EXAMPLE of information I gathered from my son’s doctor. This is NOT an approved or official standard of care being endorsed by the Galactosemia Foundation. Ask your doctor’s office to prepare something like this for you and your family. 6 months – 3 years of age Doctor’s visit every 6 months (or as needed) including: Medical exam Psychological Exam (6m., 1 year, every 2 years after that) Social Screen ( 6mo., 1 year, then every 2 years after that) Labs Gal-1-P (blood test) Galactitol (urine test) Vitamin D level (blood test) Girls only labs (2 years old and 12 years old) LSH FSH Eye exam starting at 6 months every 1-2 years 3 years of age and up Medical exam and labs 1x a year 6 years old Dexa Scan (bone density)

9. Plan, Prepare, and Be Organized

10. Ask Questions/ Identify Problems/ Look for Solutions

11. Involve Your Child

15. Take Care of Yourself

16. Take Care of Self

17. Tips to make restricted diet easier

18. Being an advocate at a Restaurant

19. Resources