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Avatar universal

what are the chances and the differences

Good Afternoon Doctor
I have NF not sure of the type confirmed with a biopsy to believe it was schwannomatosis..I have no lisch noudles but other signs like CAL marks and Freckling... now for the question i have 4 boys 19, 12,9 and 7. my 3 younger children have just finished their eye exam.. my 12 and 7 year old were told they have Lisch nodules.. the genetics dept finds that odd since they feel i have schwannomatosis. (only one tumor was biopsied and now they are thinking I have NF-1 and NF 2 both) any way they are wondering if my ophthalmologist sees IRIS NEVI's instead of  Lisch nodules..
What are the differences between the 2 and how do you tell.. a slit lamp was used and this ophthalmologist has been practicing for 16 years. (the type of eye doctor that you usually see, the one that isn't a MD saw them first)
my 2nd question is what is the likely hood of brothers having IRIS NEVI's. I truely trust this eye doctors and truely feel they are correct, but now I am not sure
I hope you can help as this is confusing now to me and my husband
Michelle
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Avatar universal
thank you for your response.. I am taking my youngest to a NF clinic next week.. I have NF and with his CAL marks and most likely the lisch nodules that are being in question I feel he does have NF.. I was tested for NF 2 and schwannomatosis and he was tested for NF 1 all negative, i was confirmed through biopsy.. they will also be checking him for noonans they feel he has both..
thank you for your answer it was very helpful.
Michelle
Helpful - 0
1573381 tn?1296147559
MEDICAL PROFESSIONAL
Take them to a pediatric ophthalmologist at an academic center who sees a lot of NF patients.  Lisch nodules are a bit fleshier and more elevated than nevi.  They are easy to distinguish in brown color eyes but more difficult to differentiate from Nevi in blue eyes.  You need a slit lamp to see them though.  Just have them genetically tested for NF if you are concerned enough.  Lisch nodules by themselves are not sufficient to diagnose NF and other findings/criteria need to be present on a good examination by their pediatrician.

HV
Helpful - 0

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