One of the many struggles of having a child with a rare diagnosis is finding the right doctor. Trust me when I tell you that a regular pediatrician (at least in our experiences) wants NOTHING to do with a kid who has a diagnosis with an unknown etiology and prognosis. They don't even want to discuss it when you come in for a regular visit. That is incredibly frustrating. Having RS is a big part of her development and discussing development is what a pediatrician does. Built in conundrum...
Then you have your team of specialists. Right now Abby has a neurologist, neurogeneticist, Neurosurgeon, ENT, Allergist, Ophthalmologist, Neuro-ophtalmologist, Pediatrician and Nutritionist (am I forgetting anyone???). Also, we just lost our OT, PT and social worker as she aged out of EI. With all of those doctors (and these are amazing docs with excellent ratings) finding someone who monitors the "bigger picture" is a huge challenge. Everyone is willing to see her for what they specialize in but no one wants to deal with the nitty gritty. Why are her toes oddly shaped? Why are her toe nails so strange? Why does she twist her fingers? Should we keep her in braces next year? Should she be seeing a psychologist for the anxiety? And the list goes on and on and on.
The closest we have come to a "bigger picture" doctor is the neurogenetics team at CHOP. When we go for visits she sees two genetic counselors, an OT, a PT, a social worker, the neurogeneticist and a nutritionist. That is as close as we get. That being said our doctor is someone who people travel across the world to see so you get your time and you get out.
We do have a network of parents online that are a huge help. People with older children with RS can provide small glimpses into the future. That is limited, however. Each child with RS is diametrically different. The symptoms vary. The severity varies. The outcomes vary.
It requires a tremendous amount of patience and faith. A wing and a prayer I guess...
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