Discussions By Condition: I cannot get a diagnosis.

Pediatric Peripheral Neuropathy

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • December 8, 2009
  • 03:17 PM

My daughter is six years of age.

Until she was 18-months, all appeared to be normal. Around 18 months, she began expereiencing difficulty walking, and compensated by walking in a 'gaurded' (arms raised) posture; this was followed by difficulty with fine motor skills (holding a cup, etc.); followed by difficulty speaking. At approximately 5 1/2 years, with lots of occupational & speech therapy, she recovered most, if not all, of her ability to speak and can write as well as the other kindergartners.

However, her walking has become progressivley worse. She now uses either a posterior walker, or a wheelchair.

In all other respects, she's a sharp, witty, mischevious six-year old.

We've been to a variety of specialists at NCM and Johns Hopkins. The good news is that they can tell us what she does not have. We have eliminated MS, MD, ALS, CMT, polio, nutritonal, and known genetic causes - all the really bad stuff. Her CAT scan and spinal fluid are completly normal.

Unfortunately, with all this medical fire power, the docs can't tell us what she does have and what the prognosis might be. Even the docs at Hopkins have described her as an 'intersting' case.

Any great thoughts out there?


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