Discussions By Condition: Kidney conditions

Baby has Fanconi's Syndrome with no apparent primary!

Posted In: Kidney conditions 0 Replies
  • Posted By: derbymom
  • January 22, 2008
  • 07:26 PM

My daughter is 16 months old and at 10 months was diagnosed with Fanconi’s Syndrome(with Failure to Thrive, Rickets, Hearing Loss and far-sightedness requiring glasses). At that point, they started looking for the primary disease and tested for Lowe’s Syndrome, Wilson’s and Cystinosis. She was negative on all three and has been tested genetically for many, many disorders. Her last biopsy showed that besides the poor mechanics of her kidneys, they are not deteriorating and are maintaining function. Her docs seem so have really slowed down on looking for the primary and idiopathic Fanconi’s is incredibly rare and almost unheard of in infants. Does anybody know anyone who has experience with this? Apparently she is the only idiopathic case here at the U of M Twin Cities. I am wondering if we need to be talking to folks at the NIH. Any input or advice would be great!

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