You have to be an advocate for your sick child. Here's why. No one else can or will. Whether you have a child with a chronic illness or a temporary one, it doesn't matter. It's important to be on top of everything so your child can get the care they need and deserve.
Healthcare has changed. When I was a child, we had a relationship with our pediatrician. He knew our family and everything about us because he had the luxury of spending time with us during appointments. He knew I had a dog, loved to read books and hang off trees. He also knew that he couldn't help with my asthma and made sure that we got the care that I needed elsewhere. However, the days of the pediatrician that knows you by name are over- not because your doctor doesn't care, he or she just doesn't have time.
Insurance has changed the way that we get care for our kids. Doctors have to see a lot of patients in a day to make the living that they used to years ago. If you're like most Americans, you're probably on a plan that's a HMO or PPO- both were created to control health care costs (which to me is a joke because medical procedures in the U. S. are more expensive than most countries), but they also limit the amount of time you have with your doctor. And, in some practices, you only get to see your “real” pediatrician once a year for a physical. The rest of the visits may be with a physician's assistant and they don't really know you or your kid. That can be scary if you're trying to figure out what's wrong with an ill child.
We've been navigating the healthcare system for years and I've been heavily advocating to find out what's wrong with my teenager for two. While I'm not an expert in the health care field, I've been a solid advocate for my child and we're finally getting where we need to be for answers.
Here's my best advice if on how to be an advocate for your sick child
If you think your child needs to be seen by a doctor, take them
Mother's intuition counts for a lot. If you feel in your gut that something's wrong, it probably is. Here's an example- Rosie had a bad case of bronchitis in the Fall. A few weeks later, her cough changed so I took her back in and they did a chest x-ray to see if she had pneumonia. She didn't, but we now know she had mycoplasma that they missed.
Pay attention to details
Be a present parent. I've discovered that there are lots of little clues, like breadcrumbs that you may miss if you're not paying attention when it comes to your child's health. Sometimes you have to be able to connect the dots for the doctors because you only have 15 minutes and you have all the relevant information.
Keep a log of symptoms
It's hard to remember what happened on Thursday, three weeks ago. When you keep a daily log of how your child is feeling every day and what's happening, it makes speaking to the doctors easier. It also makes you more credible. With Rosie's migraines, we were able to see clear patterns so we'd know how to proceed with a treatment plan.
Carry their current medication list
It's important to know what medications they take and the dosages. It's also imperative to teach your kids the medications they can't take due to adverse reactions. If you're like us and have a long list, it can be hard to remember.
Do your research
When Rosie was five weeks old, she was diagnosed with GERD. How did they know? I did a full week of solid research online and could explain very clearly why it wasn't just colic. If you think there's something wrong with your child, don't be afraid to Google the symptoms and don't be scared to ask the doctor about it as well.
Doctors speak in lots of jargon and sometimes they don't even catch it. To a layperson, it can be very confusing. If you're not sure what something means- ask them to explain further. If you're confused by a recommendation, ask for clarification. It's their job.
If you have an older child let them speak
While you're a parent, you are a third party- the illness isn't happening to you. If you've done a good job paying attention and logging everything, let your child fill in the holes. Only they can tell the doctors exactly how they feel.
Medicine is not an exact science, however your doctors should be able to give you some answers. I'd rather hear, “I don't know” from a doctor and then ask them who might then keep chasing my tail. If your doctor doesn't know, ask for a second opinion. Doctors confer with other doctors all the time. Have them find someone who may have more knowledge or deal with cases like yours.
Don't be afraid to say no
Just this morning, we got a recommendation from a doctor that we're going to pass on the procedure as there's no reason to subject our teen to it since we're going to the Mayo Clinic in two weeks. It's okay to decline treatment if it doesn't feel right. Get another opinion and make a decision.
Understand how your insurance works
It's confusing. Find out what they'll pay for and what they won't. Learn everything you can about your policy- that way you won't wind up having a procedure that insurance won't cover or paying a bill that may have a write off amount.
As for communication, here are a couple handy tips:
Find out how to navigate your health care provider's phone system
It's frustrating to leave message after message. Often there are shortcuts in the phone system. For us, all we had to do is Press Four to speak directly to a nurse in neurology. Saves a lot of time and aggravation.
Sign up for a patient portal
Many physicians and hospitals have online systems where you can view test results, cancel appointments and even email your team of doctors. When you're dealing with multiple departments, it's helpful to be able to shoot a message and it saves time.
As any parent can tell you, it's not easy to have a chronically ill child. It can be frustrating dealing with doctors and hospitals all the time. However, only you can advocate for your sick child. You have to fight to find answers and the right treatments.