Can it be explained to me in simple terms?

My daughter is 5 years old.  She was born with a spot on her finger, and within six months the spot had grown into a lesion.  At that point I took her to a dermatologist who performed a biopsy and diagnosed her with linear porokeratosis, and sent me on to a pediatric dermatologist who then changed her diagnosis to epidermal nevus.  I have asked several times to have this condition explained to me in terms that I can understand.  It has yet to happen.

My daughter has lesions on both hands, her ankles, her toe, in her armpits, on the back of her knees.  In addition to these lesions that follow the lines of Blaschko, she also had an outbreak of what I can only assume is lichen striatus.  I assume this because of the research I did on my own.

She currently is being treated with Tazorac ointment, and while it is somewhat effective, these lesions grow back so quickly that it is devastating.  I check her daily for new lesions and growths, and yesterday I found new growth halfway up her arm, and you can clearly see that it follows a white line in her skin.

What I want to know is what causes this?  I know it's genetic, but I would appreciate learning more.  Also, are there any support groups out there?  I could use someone to talk to about this.  I have two other sons, and they don't really have serious skin problems.

Thank you for your time.


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