Discussions By Condition: I cannot get a diagnosis.

A unhappy 6 yr old girl

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: nickey
  • May 10, 2011
  • 07:41 PM

I have a six year old girl who has several medical problems, but no one can piece together everything to perhaps give me some sort of reason why she has so many issues. Let me begain. My daughter was born with six fingers on each hand. One was tied off and cut a few weeks after birth and the other was too small so they said her hand would grow into it. She developed a rather large birth mark patch on her forehead ( resembled ring worm) at approx. 3-4 wks old. this area begain to pop up all throughout her body. she was sent to dermatology who bx a section and dx her with urticaria pigmentosa. At approx. 1 yr old she developed a large lump on/near her lumbar spine, we were sent to ortho who did x rays, MRI, ultrasounds of the area all of which were normal. Ortho told me that he is not sure what it is but it is definitly not normal and we should prob. see a more advanced specialist. Pending word from that her lesions begain to appear over her neck, face, back and arms. she started getting bumps that form without draining, but are very painful for her. She broke her are outside playing and derm said that with her dx softening of the bone can happen!!!! Derm has now sent us to a more advanced specialist and suggested that she may have some sort of genetic disorder. I'm about at the end of my rope, i just need to know what is going on with my baby...can anyone help??

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