by Lisa Moreno-Dickinson
My first toe to toe was with my son’s pediatrician who diagnosed him with everything under the sun when he should have been passing the ball to a physician who might know more. My son went an astonishing eight months without growing and it was me who had to bring it to their attention.
I listened to their suggestions, even tried some of the things they suggested. Colic was a routine diagnosis when, actually, at that time my son was experiencing chronic intussusception—a condition which cuts off the blood supply to part of the intestine which can lead to a tear in the bowel, infection and death of the bowel tissue. Unfortunately for my son, the long wait for the right diagnosis meant that we later found he had some scar tissue and death of the bowel tissue.
After my son was finally diagnosed through genetic testing, surgeries, biopsies and a clinical workup, after I had to surge forward and become the researcher that his doctor chose not to be—I finally had the guts to march back into his pediatrician’s office and confront him with the fact that Brody had this very rare disease.
“Okay,” he said. “What do you want me to do about it now? So we now know he has a life threatening disease what more can I do?”
I was so taken aback by his arrogance I said, “You’re right. There is nothing you can do now for my son. But understand you could have done a lot more when he was six months old. I didn’t come back to tell you because I would ever put Brody in your hands again, I came back so the next Brody that comes through that door, you might know better what to do”.
When our loved one is facing a medical emergency our first thought is to get them to the hospital.
In a panic, most rely on the doctor to be able to have all the answers and have those answers be the right ones. But what if your doctor is wrong? Or doesn’t provide you with answers? This article is to bring awareness to uneasy circumstances and encourage you to use your voice.
There is something to say about following your gut. I believe more parents should be advocates. We put a lot of responsibility and pressure on these doctors, and yes, they have prepared themselves for this profession but they are human! They are not supernatural nor hold a crystal ball, they are working with what they know.
Most doctors are seeing patients daily, some offices will see over 50 children a day, if not more. They do not have the time to spend research researching rare diseases and their new treatments— not when it means taking away time from the majority of their other patients. So, then what can we, as advocates, do? When can we, as parents, step in and disagree with a doctor?
- Be the most informed. Commit yourself to being the main source of knowledge about your child’s condition and help work alongside your medical team by:
- Keeping records of your child’s blood work
- Keeping a journal of your child’s symptoms
- Storing a list of all medications
- Do your own research if your child is diagnosed try to find a foundation or scientific journals written about the disease and gain more information.
- Listen to your child
- Go with your gut and don’t be afraid to ask the hard questions
When a doctor sees your child for the first time, they’re only getting a snap shot of what you have been dealing with. Provide your doctor with videos or pictures that can help them if the symptoms are not presenting themselves during the appointment. A great doctor will drop the ego, try to diagnose but if they do not know what is wrong they will follow up with you and either provide a game plan or get you in touch with a doctor who might be able to help.
What Does Being an Advocate Mean?
By definition, an advocate is someone who speaks or writes in support or defense of a person or cause. To me and most who are in the rare disease community, an advocate is someone who speaks up for your loved one, their rights and provides a sounding board for complex medical decisions.
Here are some basic rules to follow when advocating during a doctor appointment.
- Ask the doctor how he came to the diagnosis
- Ask where you can get more information on the condition
- Ask to be on a list so other families with a similar diagnosis can connect with you
- Ask the doctor to write your child’s school with a description of their disease, syndrome and possible side affects of medications
- Ask the doctor what is the treatment plan he has prepared will be
- Ask the doctor to provide all of his contact information in case it is needed to approve the treatments at another facility. Sometimes within our rare disease community a lot of the medication is off label (meaning that they may work, but are not FDA approved for their disease.)
- Ask the doctor always for all labs, results and films if X-rays were done
Forget the small folder of papers, you’ll need a filing box. Trust me. Keeping all records is important. This is imperative for all future tests and appointments. The doctors who are looking at your child’s report depend on that information as concrete evidence to guide them towards selecting the next test or treatment.