7 BEING YOUR CHILD’S ADVOCATE. What Is An Advocate?

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Presentation transcript:

7 BEING YOUR CHILD’S ADVOCATE

What Is An Advocate?

Interesting Research

6 Skills to be an Effective Advocate

Becoming Informed

Learn the Rules of the Game

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)

Plan, Prepare, and Be Organized

Ask Questions/ Identify Problems/ Look for Solutions

Involve Your Child

Take Care of Yourself

Take Care of Self

Tips to make restricted diet easier

Being an advocate at a Restaurant

Resources

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