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  • Please advise!!!

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    Old 10-06-2011, 07:32 AM   #1
    Join Date: May 2005
    Posts: 88
    barbw HB User
    Please advise!!!

    HI! I don't have to much time (at work!) but am getting severely worried about my daughter. She is 12, when she was about 6 months old, I first noticed a brown spot on the abackside of her forearm. I thought at first it was a soda stain! When I was scrubbing it, I realized it was not coming off. I had never noticed it at all until that time, which I thought was strange. Fast forward to now. The spot seemed to grow a little bit at a time, but I just figured it was a birthmark, and was growing, because she was growing. Still did not think to much about it. But, in the last year, it has spread all the way around her arm now and is getting bigger by the month. She also is having new patches of brown starting on about 4 other places on her body. There are no tumors that I can tell, just these brown spots. I thought all this time, that it was a birthmark, but as much as it has spread this year, I am getting a little nervous about it. So far, she isn't to sefl conscious about it, but I know she will be soon. Does this sound like something that can happen with Neurofibromatosis? Thanks for any information!!!

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    Old 04-16-2012, 08:54 PM   #2
    captcire's Avatar
    Join Date: Apr 2012
    Location: Baton Rouge, Louisiana
    Posts: 4
    captcire HB User
    Re: Please advise!!!

    Hi, I am 42 y/o and have NF 1. The cafe au lait spots can grow as the person grows. Some people, unless they are watching it, don't even notice that it is growing. I have many spots all over my body as well as hundreds of surface neurofibromas on my chest and body. With the way you explain the growth of the spots on your daughter it is worth getting checked out by a dermitologist. My daughter who is 6, has several spots on different parts of her body and was examined by a doctor and thankfully was given a clean bill of health. I wouldn't stress over it but I would at least have her checked out if anything to ease your mind and start the process for your daughter to understand what is going on with her body and what she should expect as she goes through puberty and what she can do to not be as self conscious.

    Old 04-23-2012, 08:09 PM   #3
    alley1234's Avatar
    Join Date: Apr 2012
    Location: warrington, pa
    Posts: 6
    alley1234 HB User
    Re: Please advise!!!

    Yes. My husband has a mild case of it. The brown spots, small tumors underneath the skin and add. You can take her to a genetics doctor and they will give her a blood test to positivey identify the gene. It takes about 8 weeks to come back.

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