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Post by missy->Plus4! on Oct 5, 2007 20:25:22 GMT -5
Anyone have any experience with neurofibromatosis? Our ped said today there is a good chance K has it.... signs include many cafe-au-lait spots, particularly in the folds of the skin, like underarms, groin. Also these little fatty tumors, can't remember what they are called. There's several other signs. She has the spots all over, plus several teeny tiny "bumps". DH has the bumps too and just had one removed actually from over his eye. It's hereditary. We will be going to a geneticist and opthamologist (tumors can develop in the eye). Will keep you updated! Thanks in advance. Missy
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Post by missy->Plus4! on Oct 5, 2007 23:22:55 GMT -5
bump
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Post by selmasings on Oct 6, 2007 4:28:18 GMT -5
Hi Missy, our nephew - who is a couple of months younger than Milly has it...he is a very happy active wee man and as yet it hasn't effected him at all - he too has the cafe-au-lait spots. There are many varying degrees of Neurofibromatosis - many people live with it all thier lives and are never aware of even having it, others have problems that are more obvious - I will be praying that your little K is able to live with no obvious symptoms if that is the diagnosis....
(((((((HUG)))))))
Update when you can hun!
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Post by rusty on Oct 6, 2007 13:34:39 GMT -5
Well, I have to say that I have looked it up from time to time. DS has different birthmarks (stork bite and angel kisses also called salmon patches), but I have one large spot that I believe is a cafe-au-lait spot.
Sorry, I could not offer more info. Please keep us updated.
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Post by Sara Jane on Oct 6, 2007 20:49:05 GMT -5
(((((HUGS))))) Missy!!! It's so scary when we find out our kids have a medical issue. I'll have to check out my nursing school textbook and get back to you. Sara
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