We paid a visit to the friendly geneticist yesterday. In case you've never done this sort of thing let me offer this bit of advice: Make plans for a long day.
Three and a half hours was about how our appointment timed out. That's a long time to hang out in an exam room with a 5 year old, a 3 year old, and a 1 year old, even with crayons, coloring books and assorted diversions. They began to erode about an hour in and continued to do so until the end. Parental patience was tested.
There was a lot of talking. Family histories were detailed to the extreme. The slightest medical note was explored. Every facet was investigated. It's weird to fine tooth so many lives and have the results charted into their appropriate slots on an ever growing family tree (in our case, a bendy willow.)
By the end we had three demonically bored kids, two frazzled parents, and one remarkably patient physician.
We also had confirmation of that which we already knew.
In thirty years of practice the Doctor has had, by her estimate, roughly a thousand or so Ehlers Danlos patients and is quite familiar with the disorder. She also has EDS herself and she, like myself, begins each day with 800 mg of ibuprofen. She gets it.
She's taking care of referrals for the Girl and the Boy to a pediatric cardiologist, orthopedist, rheumatologist, and a pediatric genetic opthalmologist because detached retinas and other eye issues are apparently more common than we thought. Annoyingly the Boy must first be "officially" referred by our pediatrician to the very same geneticist he just spent 3.5 hours with so that everything is copacetic with the insurance company since the appointment was "officially" only for the Girl.
I'm scheduled to visit my own doctor next week to get the referrals I need to the same specialties.
I tell you, it's one thing having to schedule one family member who suddenly has to see a host of physicians; it's an organizational nightmare when we have to arrange those appointments for three of us.
I have the distinct impression we'll be busy this autumn.
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