My son is very adorable and lovable. He is the boy who his therapists think about when they lay their head on the pillow at night. They go to extra training classes and do research to try and find ways to help or diagnosis him.
I don't think we have any doctors who care. Once they walk out of that room, they don't give Grant a second thought. In fact the first 3 times I saw our developmental pediatrician my foot was badly broken and he asked what happened all 3 times. You would think that a broken foot would make you somewhat memorable....
I posted below that my son is 2 and unable to crawl, walk, talk, eat, etc. He was born at 40 weeks and had no nicu time. He has had microarrays, and whole exome sequencing done along with tests do other syndromes. He's had an MRI and a million blood tests. We have secondary diagnoses (ones that do not explain the severe delays) of Hypothyrodism, Autism and now Ehlers Danlos. The last two not everyone seems to agree with. We see a Developmental pediatrician, endocrinologist, neurologist, and about to see an orthopedist and urologist.
So my question is - Do you have a doctor who you thinks truly cares about your kid? And where should I go to find one for my son? I live in north east Indiana, but I would travel to the end of the world and back if I could help my son.