Become a Medical Advocate for Your Child: If You Don't Do It, No One Will

I have a child with a serious chronic illness. My child was diagnosed only after I spent months trying to convince medical professionals that there was something very wrong. Even after I learned the hard way about how doctors sometimes disregard a parent's instincts and observations, I allowed my child's health to deteriorate for another year following diagnosis, all because I didn't feel qualified to question the specialist treating him. When it became apparent that my child's doctor was not listening to me or my child, I started to look around for help, and I began developing new strategies for navigating the medical system.
What I learned has saved me a lot of time, grief, and feelings of helplessness. Whether you have a child with a serious or chronic health condition, or your child is rarely ill, it is important for every parent to learn how to become an effective medical advocate for their child. With doctors and medical professionals overloaded and bogged down in administrative details, even the most caring doctor can fail to see the overall picture of your child's health and well-being. It's important for you, as the parent, to be a vocal central clearinghouse for all of your child's medical information. Here are some tips for getting started. And don't worry: being an advocate for your child is much easier than being an advocate for yourself!

Organize. Even if your child is perfectly healthy and only sees the doctor for well-child checks, it's important to keep good medical records in a central location. Create a 1" ring binder to contain all of your child's medical information. Include plastic sleeves to hold small papers like receipts. Attach a pen to it. Stick one of those portable three-hole punches in it.

Document, document, document. Carry a paper and pen with you to your medical appointments. Some people are embarrassed to carry their child's medical binder with them-at the very least, take a piece of paper and a pen with you. Take notes. Even if you're just calling the nurse with a quick question, note the date and the information you receive. Place that paper in your binder. Make copies of any lab orders before handing them over to the lab. Ask the nurse for a copy of your child's growth chart and update it when your doctor does. Create a Main page in your binder-- a Table of Contents. Number each dated entry and number any paperwork related to that doctor's visit or communication with that same number. If on June 1^st, 2003 your child had some lab work done and it is number 17 on your Main page, mark the copy of the lab order 17 when placing it in your binder. This will make finding paperwork easier. Keep everything in chronological order.

Do your own research. This is important for simple matters like routine vaccinations as well as complex medical conditions. There are a number of valuable online resources that can help the layperson to become knowledgeable about any medical concern. Start with the U.S. National Library of Medicine, the National Institutes of Health, and Medline. Commonly-used websites like WebMD will get you started, but if you're looking for more than a surface treatment on the subject, you'll want to read some more developed (and difficult) material.

Part of researching is also checking into your child's doctor. Check your state's medical regulatory authority to find out if any disciplinary actions have been taken against your doctor, or if any complaints have been filed. Also, check academic articles databases to see what scholarly works your doctor has authored. This will often give you an idea of what your doctor's "pet projects" are-this can be very good information, especially if your child's doctor is a specialist. If your child sees a pediatric gastroenterologist for an Inflammatory Bowel Disease and your child's GI has written all of his papers on Acid Reflux, that's a good sign that treating an IBD is not as much his specialty. Not all specialists are equal, and research can help you find a doctor that's tailor-made to treat your child's condition.

Discuss your findings and questions with your doctor. Once you've done some reading on the subject and you have some thoughts and questions, run them past your doctor. Do not feel as though you have to rush through. Your doctor is very busy, it's true, but your doctor's office bills your insurance company for an hour of their time when they spend ten minutes with you. If you need more than ten minutes, take more than ten minutes. The doctor works for you. If your doctor seems irritated by your questions, don't back away. Most doctors are, sadly, not used to having informed patients or patient advocates. Most doctors get used to it quickly and will give you more information and explain things better once they know you're really interested and well-informed. If your doctor makes a pattern of condescending to you or brushing off your attempts to ask meaningful questions, it may be time for a new doctor.

Trust your instincts. If you feel that your doctor isn't doing enough, or that your doctor doesn't know as much about your child's medical condition as you'd like, you're probably right. The medical establishment has trained the patient (and the patient's parents) to not ask questions and to blindly trust in the medical professional. It's time for parents to trust their instincts when they feel that something isn't quite "right" about their relationship with their child's doctor-it never hurts to look around and see what else is out there.

Find other parents in your shoes. This applies especially to parents of children with specific medical conditions, but even parents researching routine healthcare matters like vaccinations can use this tip. The internet is chock-full of support groups for parents of children with asthma, cancer, allergies, autoimmune disorders, and virtually any other medical condition imaginable. These parents who have been there before you are the single greatest asset to any parent who is learning the ropes of dealing with a child's health issue and the medical establishment. Save yourself years of learning the hard way by finding and learning from these parents.