I'll let you know when she's 20!!! Seriously, that seems to be the consensus. The 2 appointments to the Geneticist in the past year gave us the diagnosis of Segmental Neurofibromatosis but she said 100% certainty can't be reached until she is an adult. The appointment with the Neurologist gave us the same diagnosis. However, she suggested taking her to a Pediatric Dermatologist, when I brought up the missing pigment she has on her left shoulder and left side of her neck.
So, the Pediatric Dermatologist we took her to last week says she has THREE different things going on with her various skin markings! I am not kidding! She thinks that the large cafe' au lait spot that goes from the underside of her left arm starting at the elbow onto her left chest and left side of her back with the gazillion freckles in it is Unilateral Nevoid Lentiginosis or the other name for it, Segmental Nevoid Lentiginosis. She thinks the missing pigmented areas are Nevus Depigmentosa and the small cafe' au lait spot on her right calf with the moles in it is Nevus Spilus (it occurred to me that it looks like a chocolate chip cookie while the nurse was taking photos, lol). One new discovery she made is a lightly depigmented area on her left eyelid when she examined her skin with a Wood's lamp (looks like a black light). She said that it could mean that her missing pigmented areas are Vitiligo but they would have to be white for that diagnosis which might develop later.
In conclusion she said that all the different things do not have complications or any negative side affects. However, when I asked her if she was sure about this not being Segmental Neurofibromatosis she said we wouldn't know until she is about 20! For reals, people. So we just have to wait and see what does or doesn't develop.
She said we don't have to do any more hearing tests or Neurology check ups which is good. Lord knows we have enough other issues to keep us busy!