- CASE FILE
Age 20, 17 yrs of disparate diagnosis, bloody urine, seizures, neuropathies, brain dysfunctions,EDS- NO answer. TOO young, no life.
ABOUT THIS CASE FILE
Son began peeing blood age 3, supposedly had hypercalciuria but no one did anything. He also has protein in urine. 2 week long headaches began age 7, supposedly migraine disorder. His fontonelle closed VERY early but docs all say it has nothing to do with anything.He had copious growths, lumps on his hands and wrists, not warts but again, no one addressed it. Seizures began age 14, a week long test later diagnosed w epilepsy. " Amplified muscular pain syndrome " aged 15 followed by EDS 3 but THEN the another rheum said no, it's hypermobile disorder. Neuropathy pain began around 17 followed by entire parts of his body going numb. He'd been diagnosed with fibromyalgia at the same time a doc discovered he had pectorus excavatum ( spelling? ).
Photo is age 14. He was a football player until a couple concussions got in the way. He also has a TBI.
There was a parent who disbelieves all medicine, medical treatments and diagnosis and it BADLY impeded progress. Since then he's begun having rheumatoid nodules, ( I know what they are. I have RA but no one will test him for an autoimmune disorder.) Three months ago his WBC, sugar and platlets tanked badly. Docs addressed it briefly but because his next text showed better numbers ( still low ) no one will do a thing or investigate further for another 4 month. He's only 20, can't do college and is just toooo young to give up. He feels like it almost daily. " I'm so stupid " is a mantra we can't get him to turn around.
He is stuck. He's gone full vegan, works out, refuses all medicine and has turned away from doctors, diagnosis and treatment. He'd been suicidal at one point because it was all too much. He was isolated, in constant pain, confused about what on earth was wrong with him and felt abandoned by the medical community. He now works very, very hard to find a path and began working with horses. He wants to be a farrier but it's arduous- he needs answers.
Please. Help. This is a GREAT kid who needs to start his life. If I've written a poor description it's because we've been dealing with this for 17 years. We're so tired of telling and telling and telling without answers.