My 11 yr old son is on day 52 of weak, stiff, swollen hands/fingers. Constant tight/dull pain, intermittent sharp needle-like pains in joints and fingertips. Was able to write, open doors etc with difficulty, now he can't even write or pull up his own pants. Cannot flex/extend fingers. Only palms and fingers involved. Palms become quite splotchy (red & white) or mottled especially with increased pain. Cheeks become flushed. Have ruled out inflammatory conditions, Fabry's disease, metabolic panel, cbc, thyroid, vit b6 and b12, brain mri, VonWillebrand, ANA, RA, streptozyme, sed rate all normal or negative. Have seen pediatric neurologist, rheumatologist and dermatologist. Waiting for results of skin biopsy, aldolase test, LDH and LFT's. Had 101 fever 9 days ago. Has been couch ridden ever since with no appetite (losing about a pound/day) and very tired, expressionless, weak. He has white blister-like bumps on pads of fingertips. Both hands equally affected, all fingers affected but bumps more prominent on middle and ring fingers. Bumps are not especially sensitive, but strange - almost as if they're fluid-filled but they're not. No hot/cold sensations altered. No response to oral steroids. Lyrica 250mg/day possibly reducing frequency and severity of sharp pains, but the tight/stiff chronic pain is still present. He is still undiagnosed and it is so frustrating because until now he has been a normal, healthy, active boy. *Did have a 3 week episode of same/similar condition in May this year. Blood tests and brain mri normal, symptoms spontaneously resolved after 3 weeks so symptoms written off as post viral. Physicians all believe the recurrence has deemed that inaccurate.
We are now emailing chart info and photos to specialists across the country. I refuse to believe that no one out there has seen this before and am just hoping this info reaches the right person. It is heartbreaking to see your child become handicapped overnight and even worse to be unable to "fix it".
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