Advocating for Your Child

Graphic that shows a Variety mom and her two daughters as well as the title "Advocating for Your Child."

We have teamed up with Nurse Lori Roa to bring you a series of blogs for caregivers. As both a registered nurse and a mom, Lori has excellent insight and ideas on multiple topics that we hope will help Variety Families, and all parents, on their caregiving journey. Click here for last week’s blog on identifying and combating Caregiver Strain.

Advocating for Your Child

In nursing school, nurses are taught to advocate for their patients with no exception. We are taught how to interpret doctor’s orders, medical terminology, pharmacology, disease process, and communication techniques. Unfortunately, these are most likely not the topics of your parenting how-to book chapters. 

However, you do know your child better than any medical professional. You see them at their best and worst, both emotionally and physically. You know when something is off. Nurses strive to give the best medical care, answer questions, and be there with your children when you cannot, but we also know parents are the most amazing caregivers. Parents are the most passionate about their child’s health and medical diagnosis and they will do whatever it takes to care for their little ones.

I’m Not A Doctor – How Do I Get Medical Professionals to Listen to Me?

First and foremost, you are an expert on your child. No doctor, nurse, or any other medical professional knows your child to the extent you do. You know the specifics of their medical history, as well as the specifics of their diagnosis. You are the most specific of specialists.

Often, within disease process, there is a varying degree of disease as well as a varying degree of treatment. We try to categorize medical conditions, giving them stages or levels or differing names, but the truth is that every case is a bit different within every body. You absolutely know more about these varying specifics that are not cookie-cutter in nature. Your team of medical professionals should work with you in partnership, open to your questions, ideas, and research. 

Here are some communication tips when advocating for your child:

-Be precise and direct. You may not have a lot of time with your doctor. He may be calling you back between seeing patients or she may even call you while actively doing surgery. And, unless you have been extremely fortunate, doctors' offices tend to schedule in 15-30 minutes increments. Therefore, you need to get as much information to them as possible in a short amount of time.

They want to know your child's name and age, what they are being treated for, and the current problem with examples and evidence. If there is something specific that needs addressing, a medication that needs adjusting, or a test that you think needs to be performed, here is where you ask for it and explain why. Think scientific process – “here's the problem, here’s my idea, here’s my proof.” Don’t leave anything out that is important but also keep the fluff out of the conversation so the time is used efficiently.

-Educate yourself. While a simple internet search on a medical diagnosis can bring up some good information, I encourage you to dig deeper. For example, if medications are listed as treatments, find out how they work and what side effects they may have. Many medical journals publish studies on new and experimental treatments. Gain knowledge on the specifics of the parts of the body that have been affected. For example, you would want to know the specifics of blood cells, blood types, and bone marrow if you are battling leukemia. Educate yourself on the specific tests and lab values. While it may sound overwhelming, you will be confident when you talk with the medical staff and know what questions to ask to help make decisions for your child.

-Keep records. Medical professionals love seeing the numbers to prove their diagnosis, but we can sometimes miss numbers and information when there is a lot of it. Some medications have certain levels that are considered therapeutic, while too much is toxic and too little is ineffective. Some medications can treat one organ while harming another. If you have your own records, you can track any significant changes over time. In the hospital, we run tests and look for abnormal numbers, but nothing beats being able to go back six months and say, “This is when we started medication XYZ, and here are all the labs since then. We need a different option.”  

-Get second opinions. Maybe you have that doctor who is unwilling to discuss treatment. Find another doctor who is willing to discuss your concerns. At the very least, your medical team should explain the risks versus benefits of each treatment option, including whatever they have brought to the table as well as any ideas you had. In addition, get copies of all your child’s images. X-rays, CT scans, ultrasounds, and MRIs can have vital information that only a well-trained radiologist can identify and having a second radiologist take a look is never a bad idea if there are any doubts.

Above all else: Persistence

As I write these bullet points, I realize these are “easier said than done" tasks due to the nature of our healthcare system (a topic for another day). But as a nurse and mother, I also believe that parents are the most persistent and passionate about their child’s health. We are the ones who will jump the hurdles. Keep calling the medical records office for the records. Keep asking for another radiologist referral. Ask all the questions, even if you have to call five times. Read until you could teach the class. 

Be persistent and confident. You are your child’s most special and cherished specialist.

Lori Roa, RN