do neurofibromas appear on a 2 and a half year old

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do neurofibromas appear on a 2 and a half year old

Postby evfamily » Thu May 10, 2012 10:56 pm

My daughter was diagnosed with NF1 at two years old. Recently, I've been noticing some bumps on her body. I'm worried that they are neurofibromas. There is one on her arm. And one on the back of her thigh. They don't have a pink or purple-ish hue. They look like flesh colored mosquito bites. They are soft. Also there is a little tiny skin bump on her lower belly -- pin sized. I'm so depressed and dermatologically obsessed with my daughter's skin. During bath time and diaper changes I visually patrol her whole body. I guess I didn't expect to see bumps so soon. And I'm hoping that their early arrival doesn't mean that she ultimately will be extremely bumpy one day. I feel stupid because it's cosmetic and not life threatening and you can barely see these small swellings, but I see them loud and clear and I love my beautiful daughter and I hate the idea of her being made less beautiful or worse disfigured by lots of lumps and bumps and tumors. Am I a superficial mother? I should be grateful that she is whip-smart and not cognitively impaired. But here I am obsessing about these little bumps. I was hoping that she was going to be one of the lucky ones who "just got the spots," but I guess we already missed that boat if I'm seeing bumps at this stage in the game. How do all the moms endure the anxiety of the unknown? The idea that the disorder is "progressive" is terrifying and makes watching my daughter grow scary instead of thrilling. Did anyone have a toddler that developed bumps?
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Re: do neurofibromas appear on a 2 and a half year old

Postby kotipup » Sat Aug 11, 2012 2:54 am

You are not being superficial. You are worried about your daughter's future, and about how others will see her and (more importantly) treat her. I can't imagine any parent of a child diagnosed with NF not worrying about the possibility of physical disfigurement from Neurofibromas. My guess is that it is not unusual for a young child with NF to have a couple of little bumps; but I'd bring it up to the NF specialist your daughter sees. Hope your daughter is well!
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Re: do neurofibromas appear on a 2 and a half year old

Postby Vandaar » Thu Sep 06, 2012 4:46 am

They could be fibromas but you should eventually check with a dermotolist if they become more numerous or get bigger.

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Re: do neurofibromas appear on a 2 and a half year old

Postby christieregister » Tue Oct 16, 2012 10:23 pm

Hi, my son is 3, and has NF1. He does have a couple of raised areas on his skin, both are on his trunk. We've been instructed by our neurologist to just watch them. I completely understand your post, and find that I obsess over it, too.
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