When you have a child with multiple diagnoses and complex medical needs, half your life is spent going to doctor appointments. My daughter has a “mystery” diagnosis. That means many different types of testing and appointments. Doctors bring in other doctors to consult and offer other opinions.
The result? A lot of doctor-patient relationships with each one being different. Along the way, you develop better relationships with some than with others, and that is OK.
I have had two appointments with two different doctors in one week, and one gave a different opinion and diagnosis for the same symptoms!
Sometimes one doctor will want to adjust one of her medications that another doctor prescribed. When this happens, I always request that they consult with the prescribing doctor for that specific medication before changing it. The doctor that prescribed it will know most about that medication and the reason for taking it.
We have also had appointments in which a doctor will dispute a diagnosis that my daughter has already received. I have even been referred to a specialist who disagreed with all of the other doctors’ opinions. This new doctor basically asked why we were there and asked us to go back to the doctor who referred us.
Then I was told about a medical home.
A medical home is where you have a primary care physician (PCP) who helps you and your child explore different options for treatment. Your PCP can be a specialist or your family doctor. (Pick someone with whom you can easily talk, and who understands your child and family.) The PCP will also help you create a team of medical professionals (nurses, social workers, specialists, therapists, etc.) to treat your child.
The PCP may send you to see additional doctors but then comes back together with you (via email, phone, or office visit) to discuss what you both learned from the other doctors. They will help make the medical decisions with you instead of you doing it all on your own. This creates a team approach for your child’s care instead of leaving you to make the decisions after gathering everyone’s opinions.
Healthcare decisions should be based on the needs of patients, not their age. Pediatric patients are treated based on their size. The right dose of medicine is determined using their height and weight. Equipment is sized for their safety and comfort.
Categories: Diagnosis & Health Care
“What’s wrong with your child?” are the hardest words to hear. Finding a diagnosis for your child is one step in the right direction. Navigating the various challenges your child will face can be overwhelming. Keep showing up and facing the challenges.