NF1 and children

Information and support for parents of children with neurofibromatosis type 1 (NF1).


is anyone else having trouble with there childs behavior in school

  • By rozebud · New reply 1:22 pm
  • 16 replies
  • Hi my son will be 9years old next month and was recently diagnosed with NF1. He also was diagnosed with ADHD and learning disabilities when he was 3. But here in the past few months his behavior has become ...

IM tired of haing hope

  • By wrb_79 · New reply 6:35 am
  • 2 replies
  • I m just tired ...

Long time lurker, interested in thoughts

  • By Cookeek · New reply yesterday at 3:18 pm
  • 2 replies
  • I've been reading posts on here for a long time and y'all are such an encouraging community, I would really appreciate some thoughts on my situation. My ds just turned 3 in February, He was born with ...

Facial dermal neurofibromas in 4 year old ?

  • By DKBaerholm · New reply April 22, 2014
  • 9 replies
  • Hi, I live in Denmark and our boy is diagnosed with infantile autism. He is now 4 1/2 years old and for 6 months now he has had 3 bumps in his face (2 on one chin and 1 on the other chin) At the same ...

3 year daughter has headaches and has MRI

  • By skrobinson7 · New reply April 22, 2014
  • 2 replies
  • My 3 year old daughter has been complaining that her forehead hurts. She complains that hurts couple times a week. Her neurologist is wanting to do a MRI. In the the mean while as we wait for the MRI ...

Surgery for 7yo daughter.

  • By Almkallas · Posted April 21, 2014
  • 0 replies
  • My daughter Stella has Congenital Pseudarthrosis, she first broke her left tibia when she was 4mos old. Between 2008 and 2010 she 4 surgeries for rod placement and replacement. But, in late spring 2011 ...

optic nerve retina coloboma

  • By Kivalina · New reply April 19, 2014
  • 7 replies
  • My 4 month old grandson just see eye doctor and he has this optic nerve retina coloboma ,Is it liked with NF? His Mother and Brother and Grandma (Me) all have NF ...

Question for those in NYC...Dr. Jeffery Allen or Dr. Kaleb Yohay?

  • By 23annie23 · New reply April 17, 2014
  • 16 replies
  • Do you go to either of these doctors? Do you feel one is better than the other? What are your experiences? Is there someone else you would recommend? I am asking because my son (almost 7 months old) has ...

Bumps on children

  • By Angstl · New reply April 16, 2014
  • 15 replies
  • Has anyone noticed bumps on their young children? How old were they when you first noticed them and where were they located ...

Bad start to spring break

  • By Almkallas · New reply April 16, 2014
  • 4 replies
  • My daughter has Pseudarthrosis she is 7 years old and she first broke her leg at 4 mos. She has had several surgeries to place and replace rods. But, since 2010 she has been surgery free, She has had ...

Changes to MRI

  • By Vivien77 · New reply April 14, 2014
  • 1 reply
  • Hi, my 8 year son had an MRI recently as he had developed blurred vision in his left eye. The neurologist's secretary called me on Friday to say the results were back and there was no evidence of an optic ...

Ilizarov frame operation for congenital Pseudoarthrosis

  • By peterheller · New reply April 14, 2014
  • 3 replies
  • Hello, I am new to this network, in fact, this is the first network I have ever joined. My 5 year old daughter suffers from Nf1 and has congenital Pseudoarthrosis of the right tibia. She broke her leg ...

when do behaviour and learning problems pop-out?

  • By lolo13 · New reply April 14, 2014
  • 20 replies
  • Dear All, My daughter is almost 6 months now. She has several CALs meeting the criteria and I recently noted two small CALs in her armpit (freckling starting maybe!).. We are waiting for a genetics referral ...

Please read it and give me advice

  • By spbhope · New reply April 10, 2014
  • 32 replies
  • I already wrote here about my daughter. She is 3 and has plexiform on her eyelid. I often think about surgery. Can't eat, sleep and live normally. I have read hundreds answers , to do my choice. If we ...

Does she need a diagnosis?

  • By mriresearcher · New reply April 10, 2014
  • 12 replies
  • My daughter is 11 years old with 7 cafe au lait spots, 6 meet criteria. She has no freckling and the eye doctor does not see any lisch nodules. I am worried sick about this. The pediatrician says not ...

NF1 and Dysmyelination

  • By NikkiScarlett · New reply April 9, 2014
  • 10 replies
  • Hi, my 3year old son has nf. He had an MRI and has Dysmyelination. Are these linked and how can this affect him. My dr does not know anything about this and has referred us to a specialist hospital in ...

NF1 and Bowel Issues

  • By Shaunie822 · New reply April 8, 2014
  • 10 replies
  • Hi All, I haven't been on in years. My son was diagnosed w/ NF1 when he was one years old. My son is now six, we have been really lucky so far with no serious issues. When my son started school we started ...

Looking for NF friend for my 7yr old in SF area

  • By arielamom · New reply April 8, 2014
  • 1 reply
  • My daughter has a mild case of NF, but feels lonely that she does not know any other kids with NF. I'm looking for a NF friend for her in the SF Bay Area-another Girl; 6-10yrs old with mild case ...


  • By mommarhoades · New reply April 7, 2014
  • 1 reply
  • i was wondering if anyone has been on interferon or if their children have. my 5 yr old son has a plexi-form that is in his bottom. it starts a little bit under his bladder and goes down into his thigh ...


  • By marieotr · New reply April 2, 2014
  • 8 replies
  • Hi. I have NF1 and have a 9 month old. When were your children diagnosed and how? I am starting with genetics this week. What should I be doing ...

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