What Rattles a Doctor?
Do you know what really rattle some doctors? Parents of children with a medical condition.
These are mothers and fathers who stay up late every night reading and learning everything they can to help their child. During the day, they talk to every specialist around the globe who will take their call or respond to their emails. Trust me, no one understands a medical condition like a parent whose child has been diagnosed with one.
It took two years of fighting to get a diagnosis for Evan and several more years to get reliable support. Two separate medical professionals even suggested we attend parenting classes, accusing him of faking his symptoms at 2-4 years old and us of being "soft" parents. I'm grateful none of them called child services on us for his frequent injuries, related to his condition—see, I still feel the need to clarify and defend.
Even after securing a diagnosis, none of the doctors we met were aware of the new name and criteria for Evan's condition, updated in 2017 (which now has a newer name and criteria as of 2023). They were still using names and criteria from the 1990s. And despite the diagnosis, one doctor thought applying lavender lotion before bed would cure him. But what do I know? I'm just the parent, not the one with a medical degree. It felt like if we questioned or corrected any information, that was our one way fast track ticket out the door.
I'll say it again: No one understands a medical condition like a parent whose child has been diagnosed with one. To clarify, this is not an attack on doctors. Some amazing doctors saved his life, and mine, when he was born prematurely. And while I don't agree with the sentiment that all doctors are dismissive, unfortunately, too many are. Though we’ve also experienced the opposite sometimes too. Truthfully, the majority of doctors we've met have been kind and wanted to help. Unfortunately, because of the health system billing system, we were given 5-10 minute appointment limits where it was impossible for them to piece together his complex medical history and arrive at the correct diagnosis—assuming they were even aware of the condition. All it took, in the end, was an old school paediatrician who took the time to listen to us for 30 minutes, a letter from our angel physiotherapist, and a 5-minute physical exam that noted the joint laxity. Such a simple act, yet no one had done it before. He was then able to make the proper referrals.
*Since moving, we now have an amazing GP. She genuinely listens, offers insightful recommendations and referrals, never makes us feel rushed, and has a wealth of expertise. On the rare occasion she's uncertain about something, she's upfront about it and commits to finding answers. True to her word, we receive a phone call a week or so later with follow-up information. I wish everyone was as fortunate to experience this level of care and knowledge. We can now leave the medical expertise to the medical team and we can have the role of being the expert in him.
**This insight specifically highlights the journey of parents with young pediatric patients. Naturally, patients themselves hold the deepest understanding of their own conditions, but in the world of pediatric care, parents often become the relentless researchers, advocates, and voices for their children.
