My mom was recently in the hospital and it reminded me again why it is so important to be advocates for our children when it comes to their healthcare. Although my mom is a very capable adult, she runs a marriage ministry, speaks and writes books but when you are sick, someone needs to advocate for you.
As a parent of a child with a chronic illness that is my job. I recall years ago when we first received the diagnosis that our daughter had a rare medical condition. I started this journey trusting the doctors. That makes sense, right? They did go through eight years of college. They did have training in their field of expertise. I soon found out I was wrong. While nothing can replace the experience and training physicians have, my training as Ashley’s mom was very important.
When we first received Ashley’s diagnosis my husband and I had to beg a doctor to look further into the issues we had noticed. At that time we had no idea what a foul odor in the urine meant or how damaging a bladder infection going untreated could be to kidneys. Nor did we understand what further testing would show going on inside that little body.
I had a doctor see us every two weeks for six months. He prescribed stool softeners and told me I need to evaluate potty training methods because Ashley was having so many accidents due to a “two-year-old attitude.” I later found out Ashley had so many accidents because her body did not form correctly and she had no nerves in place to keep her stool from leaking out.
Don’t be afraid to advocate for your child. Don’t be afraid to offend a doctor if it is for the welfare of your child. There is a way to do it with class and not have your face plastered in the doctor’s lounge on the “Crazy Parent” bulletin board. (To date, I’m 99% sure I am not gracing the bulletin board in any doctor’s lounge. Although, there was a small incident with one of my mom’s doctors. I’ll save that story for another post)
Right now I have one physician on Ashley’s case that is the top dog. He is the lead doctor in Ashley’s life and one of the tops in the nation. Several months ago he could not get to the bottom of Ashley’s problems and the failure to get a treatment plan that actually worked was having a negative effect on her health. This doctor, whom I have so much respect for, said, “If you want to get another opinion, I can refer you to other children’s hospitals and we can see if someone else has a better idea.” At first I thought, “He is trying to dump us.” Once you find doctors as amazing as some that we have found, it is like a relationship. I think of them at the holidays, on special occasions – I definitely don’t want to break-up with them!! I dug further and found out that he knew he was at the end of what he could suggest would help Ashley. He didn’t want me to stick around thinking it would hurt his ego if we moved on for another opinion. After discussing a new treatment plan and some experimental options, we stayed in the relationship and Ashley has been on a steady course of improvement. Would I have left this doctor and headed to another hospital thousands of miles away? Absolutely!! Because that is what is best for my daughter.
Here are some ways you can advocate for your child:
• Become an expert on the condition – I can’t imagine having to do all the research I have done in a library. The internet is my best friend! I think I have read every article, study and research paper on Ashley’s condition. Soon after receiving the diagnosis I started a three-ring-binder that is divided into sections and I would print articles and questions for my doctors and keep them with me. My mom bought me a used ipad last year so now I have transferred my research into an electronic version so it is always with me.
• Don’t be afraid to get treatment away from home – We are fortunate to live in South Florida close to several top rated children’s hospitals. After doing some research I found the best hospital and doctors for Ashley’s condition was 1,800 miles from our home. We found medical programs that helped with the expense of getting us there and have been able to have the top doctors treat my daughter. I will do another post on ways you can fundraise to offset travel expenses. The Do More Foundation also assists with travel grants.
• Connect with other parents- One of the best resources I found early on was a Yahoo message board for parents of kids with my daughter’s condition. I have received hundreds of emails that have helped answer questions I had at the time and questions that I may face in the future. I found places to get our medical supplies cheaper and information on how to cope with a medically needy child.
• Advocate – You may not have been through eight years of medical school but you know your child best. If you think something is wrong – SPEAK UP! If you think more should be done – ASK! If you think a more experienced medical team is out there – GO! Don’t be afraid to calmly ask more of your doctors. Don’t be afraid to ask for additional testing. Don’t be afraid to run down a list of diagnosis and ask if any of those could be what they are looking for. I have done all of the above at one time or another. It was worth it!
We have been given special gifts to care for. Don’t be afraid to do what is best for their health.
