Good Beginnings 9: Parents as Their Children’s Advocates

When 5-month-old Mason’s head became increasingly misshaped, his mother, Jeannette Winkey of Palmdale, knew he needed help. “Specialists had said that a cranial helmet would help mold his enlarged head,” she said.

Mason had been diagnosed with hydrocephalus, an abnormal accumulation of fluid in in the brain.

“He wasn’t holding his head up, or grabbing on to his own bottle, or rolling over like his sisters, Brooklyn and Holland,” noted the mother of triplets. “I knew his problem was more than cosmetic, and I knew he had to get that helmet before the bones in his head hardened and it would be too late.”

After making more than 30 phone calls and responding to numerous requests for documentation, Winkey finally succeeded in getting her managed care provider to approve the $4,200 custom-made helmet.

The family’s ordeal is featured in this week’s “Good Beginnings” segment, which highlights the importance of early learning, health and safety during the first five years of life.

Because new parents often don’t know where to turn if their concerns about their child’s development or health are dismissed by their doctor, medical group, or insurance company, the segments will provide helpful tips for advocating for one’s child.

“Parents are the best advocates for their child, because they know them best,” said Dr. Norma Rosales, a pediatrician and health policy advocate. “I advise parents to write down their observations and concerns, and present them to their doctor at the beginning of the office visit. And insist on tests or followups with specialists if your concerns are not addressed.”

Five Tips for Advocating for Your Child:

1. Know that you are the expert on your child.
2. Write down concerns and discuss with your pediatrician
3. Ask for and accept referrals and assistance.
4. Keep records of health assessments, tests, and medications.
5. Establish a medical home so one doctor who knows your child well can help manage care.

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