Neurofibromatosis
Has anyone got this, or has any of your children got this? My son is almost 2 years old. He has café au lait spots/birthmarks. The dermatologist said that these marks are linked to neurofibromatosis, and I'm really worried now. He also has recently had an operation to remove two cysts inside his chest. The surgeon said they look benign. But will get the results back in 6 months time. He has a freckle in his eye also. He hasn't got any other symptoms. Does this sound like he has neurofibromatosis? When do all the tumours start growing? Someone please give me some advice. I'm really worried now
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My son was confirmed de novo NF1 when he was 2m. He's 2y 9m now. Neurologist said to pay attention when he goes through puberty because that's when the hormones will create more changes in the body. Not everyone gets neurofibromas... Every person's journey is different.
I can't offer advice but sending you positive vibes. See what results come back as and try not to stress (easier said than done, I know) and just enjoy time with your baby while they are so small as they grow quickly. X