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Does anyone have a child with Neurofibromatosis?

My pediatrician has brought this disease up a few times because of my sons cafe au lait spots. I google it all the time to see what to look for, but was told all we can do is keep an eye on him till he hits puberty. (he's only 11 months) If anybody has this or has a child with Neurofibromatosis... any advice?? Is it easy to live with?

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stefanie.b

Asked by stefanie.b at 7:47 PM on Mar. 20, 2009 in Kids' Health

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Answers (5)
  • Yes, two of my kids have NF1 and my husband has NF1 as well.

    First, do you have a NF clinic by you? Ask your pedi and see if there is one. I have found that doctors don't know a lot about NF. But if you can find an NF clinic, they are very knowledgeable about it. They need to be watched more closely than what your pedi suggested. My kids have yearly MRI's and yearly appointments at the NF clinic.

    NF is so variable. MOST cases will be mild. My daughter has a plexiform tumor underneath her tongue and a optic glioma. They haven't caused her huge problems right now. However, she does have ADHD and some other learning difficulties (which is VERY common in kids with NF1).

    Ryker just has the CAL's. He is developmentally delayed but we're not sure if it's due to the prematurity or due to the NF, both of which are possiblities.

    My husband has a mild case as well. He also has Dyslexia.
    MamaCeleste0722

    Answer by MamaCeleste0722 at 2:10 PM on Apr. 6, 2009

  • Cont.

    If you have ANY questions, please feel free to PM me :)
    MamaCeleste0722

    Answer by MamaCeleste0722 at 2:10 PM on Apr. 6, 2009

  • My son has Nf1. He has a large plexiform neurofibroma (tumor) in his pelvis region. He also has ADHD & ODD. His Nf is VERY aggresive. He has had 7 MRIs so far. We are getting treatment through NIH (National Inst of Health). There is no cure for the disease and no proven treatment. Evan's treatment hasnt been successful and he is facing surgery to reduce the size of his tumor. I found out the I am the carrier of the disease. I have never had any problems with the disease besides a learning disability in math. So there are extremes to the diease, it varies from person to person.
    MnqHbrt

    Answer by MnqHbrt at 1:10 PM on Jun. 21, 2009

  • Yes my oldest dose. She was diagnosed right around her first birthday. So, far she only has a 1st dergree family member with it(me) and 6+ cafe-au-lait spots.
    I think you should be watching closer then what your son's doctor said.
    Each case of NF is different. I have what they say is a bad case a optic glioma removed when I was 8 that left me blind in right eye. I also have scoliosis and learning disability. I have had many neurofibromas removed.
    Now my brother just a a few spots and a learning disability. My sister nothing at all.
    If you have any questions please feel free to PM me
    WhiteRose071406

    Answer by WhiteRose071406 at 5:36 PM on Jun. 29, 2009

  • My son has NF1. We didn't know anything about it as no one in the family has ever had NF. He broke his leg at 6 mo. old and we didn't know why. He was diagnosed and has to have regular MRI's, see a geneticist & opthamologist yearly, and he sees an orthopedist regularly. His NF caused pseudo arthrosis of the leg which is where the bones in the lower leg don't develop correctly and it causes them to break. These bones don't have the healing properties that regular bones do. So he will have a broken leg for the rest of his life. However, there are many treatments for most severe cases of NF including my son's and all children with NF have the ability to live very happy healthy lives. Ask you pediatrician to recommend a good NF Dr. My son goes to a children's hospital to see his specialists. The best thing to do is be proactive and don't panic.
    TinaTJ

    Answer by TinaTJ at 5:41 PM on Aug. 15, 2009

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