If your child is diagnosed with a disease that is not straight forward with a tried and true protocol that doctors are well versed in, you might consider a second opinion. We are taught that doctors know best, but you the parent are your child’s advocate. As such, you need to push back if you are not getting answers and listen to the little voice you hear in your head that the doctor may be out of their depth.
When my son, Gavin was going through his first major health crisis at the age of 6 (a bout of GI disease and auto-immune hepatitis brought on by his CVID) we were at a prestigious children’s hospital in a major city and felt confident we would get answers. As days turned into weeks and then months without progress, we decided it was time for a second opinion. No parent wants to be told by their child’s doctor when asking what Plan B was if the new approach did not work, “This is Plan C, there is no Plan D.” That was the final straw and the moment we started frantically searching for a new hospital with different doctors. Ones who were willing to admit when they were in over their heads and willing to consult with doctors around the country and ultimately world as they tried to figure out a particularly hard diagnosis and treatment plan.
While ultimately, we could not save him, I truly believe that decision to switch doctors prolonged his life another 5 years by moving his care to Johns Hopkins in Baltimore, MD. When I told the first doctor that we were getting a second opinion, her response was, “Having two doctors is like having two mistresses, you cannot have two – you have to choose.” So we did choose and it was not a hard choice.
Trust your instincts as a parent and realize that doctors do not know it all. The more informed you are, the more you can advocate for your loved one’s care. (see blog How to Research Medical Treatments).
Leaving a nearby hospital for one farther away can make logistics much more difficult for the family (see blog Hospitals Far From Home)
– MEG