Advocating for our children in the healthcare system is the duty of the parent.  I first want to say that I believe there are plenty of great doctors out there, and just like everything else, we have to go out and find the best for our kids.

I am not trying to be a Debbie Downer, but there is a good reason for me to bring this up.  Medical error is now… Are you ready for this?  Number 3 on the cause of deaths in the United States!  That is flabbergasting and unacceptable in my opinion. I don’t want my family or yours to be a statistic.  Source

Medical Records

Before your child is born or start now, keep the papers that you receive at the doctor’s office.  The best thing to do is to have a manila folder you drop them in every time you return from an appointment or a binder that you put them in.  If the nurse does not give you any paperwork before you leave, ask for it. 

Now with all the MyChart and portals, it makes it easier to print out the important stuff.

Keep note of medications in this binder.  Often times you are asked what medication the child is on. This health binder can be used if there are future health incidents, if you’re changing doctors and you can pass it to your child when they leave home.  Maybe they will be inspired and continue to keep the binder throughout their lives.

You can keep dental information in this file too.

Notetaking

It is a good idea to keep notes of questions you have about your child between wellness visits. Before the appointment, sit down with your partner and discuss any questions ya’ll have about the child.  Write them down. It is easy to forget things when you are at the office.  If you have your notes, no worries. 

If there is anything that concerns you or the child becomes ill, be specific on the notes because the doctor is going to ask you specific questions, and it is always better if you can answer. For example, how many times they threw up, when did it happen, where it happened, what did they eat, how much did they eat, how many days did this last?

Always keep track of the medications you give the child and the times you give it because the doctor will ask for this info.

When the child runs a temperature, keep note of the temperature and the time.

 

Comfort Zone

In a study posted in an issue of Health Affairs, researchers found that patients are uncomfortable bringing up other things other than what the doctor asks about.  The reasons depended on the age of the patients or if the patient spoke a different language.  “Many physicians say they are already doing shared decision-making,” said Dominick L. Frosch, lead author of a newer study, “But patients still aren’t perceiving the relationship as a partnership.”

Bottom line, we’re probably going to have to step out of our comfort zone at some point or another if we’re a parent who takes our kid to the doctor.  Just keep your eye on the goal, and remember your child needs you to step up!

 

Advocate for Your Child in the Healthcare System

 

I am willing to bet that no one on Earth cares about and loves your child like you do.  If you won’t advocate for him, who will?  If you are not happy with something, never be afraid to speak up.

Research

Now I will be the first to tell you that Googling can lead to more worry, but at the same time, if you’re worried and you can’t sleep anyway, you may as well become educated on the issue.

If your child is diagnosed with a disease, an impairment or something that is going to be on-going, you will definitely want to research.  Find out everything you can.  Find out if there are any supporting organizations that you can join or people that you can connect with.  Don’t hesitate to speak with others who have gone before you.  They can save you time and give tips.

When researching, don’t just use one source.  Use several sources to ensure the information lines up.  

Research to find out if there is something your child can receive therapy for such as speech therapy from the local elementary or physical therapy or at home health care.  These are bonuses that sometimes go unmentioned. Be sure you are taking advantage of all your resources.

Communication is Key

  • Pay attention that everyone who touches the patient washes their hands.  If they don’t, kindly ask them to do so. “I would appreciate if you washed your hands.”
  • If there is anything you are wondering about your child or something different you have noticed, speak up.  Don’t worry about being judged as a worrier.  
  • If you think someone who is medically in contact with your child is under-qualified (3 pokes and still haven’t hit a vein), speak up and refuse to allow them to touch your child.  It is uncomfortable, and the doctor’s office or hospital will more than likely argue and act offended.  Dismiss it, and stay respectful.  
  • Ask questions.  It is fine to take notes.  Keep asking until you are clear. You can keep the notes in the health binder. 
  • If the doctor uses medical terms that you don’t understand, ask them to explain.  Don’t be embarrassed or worry it’s a term you should know.  It is their job to educate us about our child.
  • If your child has seen anyone else such as Urgent Care, always mention it, so the doctor is totally informed and can add it to the office notes.
  • If no one calls you with results when they said they would start calling them immediately.  Don’t worry about being a bother.  Also, if you are going to be waiting for results, be sure you ask, “When can I expect the results?” before you leave.
  • At all times, stay calm and think before you speak.  Once you “go-off” you have lost your integrity. *Be assertive, but be respectful and polite.

Advocate for Your Child in the Healthcare System

 

Change Physicians

If you feel so uncomfortable that you can’t speak about every single thing you wonder about your child with the child’s physician, change physicians.

There are physicians who follow certain belief systems about childrearing.  If you’re not on the same page on several topics, change physicians early on. Ex: co-sleeping, spanking, cry it out method

If you are not completely satisfied with the quality of care your child is getting, switch to a different doctor.  It is a little work to find a doctor, but with everything online, you can find recommendations.  Go to the Nextdoor app and ask your neighborhood.

Never be afraid to get a second opinion if you are dealing with a serious issue.

 

Follow Your Gut

If you know that something is not right and you are being dismissed, follow your intuition as a parent. Children’s lives have been saved and issues have been detected early thanks to parents who followed their parental instincts.  I want to stress that you should know your child best.  If something in you feels something isn’t right, pursue it.

Advocate for Your Child in the Healthcare System

Personal Stories 

Story 1:

As I mentioned in a previous article, I had to pursue an issue with Luke.  My gut told me something wasn’t right.  He was often rubbing his joints and crying through the night that his legs hurt. From my research, he was young to be having growing pains. It was bothering me for some time, and the bother was starting to take up too much brain space.

I mentioned it to his doctor, and she blew me off.  She said it was growing pains. I went to another doctor in town for a second opinion, and he felt I was being overconcerned.  He ordered blood work because he said he wanted to cover all his bases.  The bloodwork turned out with some issues.

Fast forward, we end up moving in the process, I get here and again I’m blown off.  The doctor called it growing pains, but he ordered blood work since previous tests had issues.  Again, there were issues with some levels.  Luke had to undergo a series of blood tests every so many weeks.  The doctor even went on to say that he promised the tests would be fine, nothing was wrong with Luke.  It kept coming out with concerning levels, and they kept sending me back. I finally told him, “We can not keep poking on this child waiting to get the results you think we should be getting.  He used the, ” I’ve had 1 case in 20 something years.”, and sent us back. Wrong. 

They recommended me to a specialist.  I researched the place. From what I gathered it was fine, but it wasn’t the best.  I made an appointment with the best!  My insurance didn’t cover it, but I went anyway. I’m not going to get into insurance.

In case you’re wondering, Luke is fine now.

Story 2:

I shared the story in my article, Growing Pains, about a lady whose daughter had leg pains.  She finally took her to the doctor, and her doctor told her it was growing pains.  The mom pursued it and felt she was blown off.  They decided to take the girl to Texas Children’s to have her checked out and help the mom soothe her worries.

Texas Children’s admitted her after her blood cell counts were found to be way off, and she was diagnosed with leukemia.  I shudder to think what could be if the mother had not pursued her instincts!  Turns out, the little girl is now a senior in high school, she volunteers at Texas Children’s, she’s graduating Top 10, and planning to go into the medical field and work at Texas Children’s some day.  It doesn’t get better than that!  

A few clips:

  1. I have had to make a comment or refuse to allow a nurse or worker to touch my children on several occasions.  There is a feeling that comes over me that something isn’t right.  At first, I get anxiety about causing any conflict, but thankfully, the mama in me takes over, and I speak up.  I have been hearing others say the same.  This is nothing to mess around with.
  2. Recently, I was at the doctor’s office at an appointment for both the boys.  The nurse who came out to get us from the waiting room was over the top rude.  She told me it was common sense to bring the records from the previous doctor. I left without being seen.  I asked that the to PA call me.  When she called me that day, I was disappointed with her response.  My kids and I no longer go to this office.
    Was it a hassle?  Oh yes, it turned out to be more work on my part.  I had to have the insurance switched to a different doctor, wait a month until it took effect and all that jazz.  Was it worth it?  It is in my opinion.  I want to model for my kids – don’t settle for anything but the best treatment and service.
  3. I’ve recently had two people tell me that they’ve had to ask someone to wash their hands before drawing blood from their child.

Call to Action

Follow your parental instinct and if no one else will listen to you, drive up to the emergency room of the best hospital in town, and tell them your concerns.  Advocate seeing a speech therapist or an occupational therapist, whoever you know your child needs.  The squeaky wheel usually gets the oil.  

The issues are real!  There’s a chance one of us is going to have a negative medical experience!  The promise we need to make to our family is that we will take action to ensure we are getting the best medical care.  There are PLENTY of wonderful doctors out there.  Don’t stop until you find your match!

***Advocating for Your Child is a series.  Keep an eye out to read the next advocating article.  Read the introduction here, if you missed it.  Every Child Needs an Advocate – The Advocating for Children Series

 

 

Children’s Literature Recommendations

**We average a little over 40 children’s books a week in our household.  I will recommend our favorites.  Others’ reviews of the books may be read on Amazon.  Click the book to see it on the Amazon site. Just know that if we suggest a book, it is up against a lot of books, and we consider it 5 star!  You may be able to find these books at your local library or your local bookstore as well. I would like to add that I tend to be persnickety on what my children read as far as subject & language content, so you can rest easy on that!

**Footnote: Your children are never too old to read picture books. It’s really hard for me to put an age on books because I believe if the subject matter is ok, read it to all ages!

 

 

 

 

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Quote: “I am a big fan of being intentional about building relationships… It is better to start building them now so you have them before you need them.” ~Carla Harris 

 

Tip of the Day:  In case you have never heard of Common Sense Media, I wanted to share that you can go to this website and type in the title of a book, movie, game, app, website, music, and TV show, and it will tell you what age the media is appropriate for. It is also worth signing up for their email newsletter because they are really good at keeping parents in the loop about what’s on YouTube, what latest and greatest to let them see or not see etc. Check it out. Favorite it, so you have it when you hear “Dad can I get this?” Great for teachers as well.   https://www.commonsensemedia.org/

 

Make it a great day or not, the choice is yours!  Remember to have fun, laugh and give God the glory! I love you! SS

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