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Just a Mom Wanting to be Heard

Article posted on Sunday, June, 13th, 2010 at 4:44 pm

It’s why I built this site…

Neely’s recovery from ADEM (Acute Disseminating Encephalomyelitis) is just part of the story I hope to share with this web-site.

Neely’s condition and recovery have inspired many families over this year to share their stories with us. We’ve heard stories of amazing recoveries, rare conditions, frustrations with doctors (primarily pediatricians), and health care bureaucracy. While there are wonderful hospitals (like Greenville Children’s Hospital) and amazing doctors (like Dr. Augusto Morales) that are truly focused on patient needs and healing; there are still far to many opportunities for patients to fall through the cracks. (Read about our journey)

Finding a physician that you feel comfortable with, is conveniently located to you, and has the hours of operation that you need only get you to the starting line. “Well Visits” and “Check-ups” are easy. Here are a few things to consider whether you are looking for a new physician or evaluating the one you have. (You should always be evaluating the one you have.)

  • Know Your Doctors philosophy on referring to specialists
  • Ask if your doctors office conducts patient satisfaction surveys or evaluations
  • Ask about hot-lines for patients or parents of patients that want more information
  • Know Your doctors relationship with local hospitals and Emergency Rooms (Ask around..)
  • Call your (or any) trusted health care insurance company to see if they have recommendations or evaluations

We are fortunate to have very good health care insurance. Neely’s Dad and I are lucky to work for supportive companies that offer not only great employee benefits. (BMW,Mfg and ScanSource,Inc) but good support systems for employees to help you find the information you need to make good decisions regarding your families health. But I realize that is not the norm. And having good health insurance is just one piece of the puzzle.

The most important thing we have learned is also the most common thing we hear from those families that have shared their stories with us. And that is:

  • Know Your Doctor and Make sure that your Doctor knows you
  • Never stop asking questions
  • Don’t be intimidated by a white lab coat and a Medical Degree
  • Don’t be timid about asking for tests seeking a second opinion.
  • Never stop doing your own research!

No one cares more about your health than you. And no one will advocate harder for a child than his/her parent. Make sure you know your doctor and know what to look for when you are choosing a pediatrician.  Help us use this website to share your success stories. How have you cut through the clutter to get the attention you needed? Share your story here…

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1 comment

  • I’m so glad that they got the Christie Group away from her. They did the same thing with my grandson. “Oh, he just has a virus”, “It will work itself out”! Bull!!! He had to stay on antibiotics for a year for reflux in both kidneys. Thank God he grew out of it. I sure hope that Neely gets over this. I have been praying for her ever since you told … See More me about her. God Bless Her! I hope you don’t mind. I am going to share this story with my friends so they won’t give up either. Thank You for sharing this with us. It’s such an inspirational story from all the family members involved. Especially Neely!

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