by 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?