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Blotchy skin, white and red patches, congenital heart defects. Chances of neurofribomitosis?

My 7 yr old has some cafe au lait spots (about 8) and has had pitirosis last year. Dr. referred us to Dermatologist to rule out neurofribomitosis, we are going in October. Also gets blotchy skin red/white blotches if chilly.....not a rash more like a pigmentation changes that fade away. Had pulmonary stenosis repair and ASD repair when 8 months old. I am very nervous about neurofribomitosis, google is a terrible thing, how common is it in people with congenital heart defects?
Asked On : Mon, 1 Oct 2012
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Internal Medicine Specialist 's  Response

Thanks for asking.

I do not think it is any more common in the patients with the congenital heart diseases than the general population.

Most of the times the neurofibromatosis is limited to spots and the nodules in the skin, other systemic involvement is very rare.

There is nothing to worry about at this stage,

Answered: Wed, 31 Jul 2013
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