NF1 and children

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


Are the signs there right from the start

  • By Rainy123 · New reply January 8, 2014
  • 10 replies
  • Hi I know people have said that nf1 didn't come out until they were teenagers but was wondering if there were any café a lait spots when they were kids or any other signs. I inherited it from my Mum but ...

Surgery or no Surgery

  • By amykirkland · New reply January 6, 2014
  • 6 replies
  • My Daughter has NF1. She is 12 and was recently diagnosed with scoliosis. Six months ago she started wearing a brace with a curvature of 41o at her last visit the cure had progressed to 58. A we were ...


  • By DinoJack · New reply January 6, 2014
  • 8 replies
  • We have our first neurologist appointment in about 3 weeks. Right now we are in the process of trying to rule out NF in my 7 year old son due to multiple CALs. What can we expect from this appointment ...

Optical gliomas

  • By trink1 · New reply January 6, 2014
  • 7 replies
  • Our son was recently diagnosed with optical gliomas in both eyes . he was born with NF1 and has several plexi forms through out his body . I am looking for anyone that has to gone through this . need ...

Gleevec and sleeplessness/pain?

  • By mrsb8 · New reply January 5, 2014
  • 3 replies
  • My 5 year old was prescribed Gleevec to try and shrink a large plexiform neurofibroma that goes from her abdomen, down her pelvis and almost down to her ankle. When she is on it the nights are horrible ...

MRI Question

  • By DinoJack · New reply January 5, 2014
  • 10 replies
  • Will a brain MRI show the optic nerve? I have Jack's MRI scheduled and the order is for a brain MRI. Originally, last week the order said head MRI. I am confused on why the order changed and if a brain ...

I need some POSITIVE news.

  • By LKZ · New reply January 3, 2014
  • 9 replies
  • Hi, My youngest of three children was diagnosed with NF1 in the middle of 2013 she was just 20 months then, she is now 2 and a bit. We knew for a year before that that NF1 could be a possibility so we ...

can you have NF without cafe au lait spots?

  • By Gypsyrose85 · New reply January 2, 2014
  • 10 replies
  • My older son fits some of the criteria. He has a large head, He has epilepsy, poor language and visual-spatial skills, does poorly in reading, spelling, and math, has NO attention span. His legs are slightly ...

Very Worried

  • By jazy · New reply January 1, 2014
  • 15 replies
  • I have NF1 and so do my boys. My older son is having a tumor removed from his left arm on November 19th. The tumor is sitting on the nerves that link to his fingers. Doctors did a biopsy but were not ...

Family Hx of Vitiligo & Big CALs

  • By ams_t · New reply December 29, 2013
  • 4 replies
  • Hello and happy holidays to everyone. I haven't posted in a while and my general situation is my son (3.5 years) has three 'meets criteria' CALs (right chest, left underarm, left thigh) and several smaller ...

Please have a look

  • By ebilou · New reply December 29, 2013
  • 2 replies
  • My son who is 6 has hypotonia developmental coordination disorder and autism. When we were seen by a paediatric doctor she was concerned about some marks on his skin and wants to get it looked into more ...

Behavioiur - normal or nf?

  • By nf1-melb-aust · New reply December 17, 2013
  • 31 replies
  • Our son who is now 5yo has nf1...he inherited that from me. When did any of you know , or have medically diagnosed, that your childs behaviour was 'just not right'? Our son is a happy, funny (sometimes ...

Bright orange spots on my daughter's face and scalp

  • By Mommy-san · New reply December 15, 2013
  • 5 replies
  • Does anyone with nf1 have bright orange spots on face or scalp? My 10 month old daughter recently have more bright orange spots around her right eye and scalp. They are not big and not so visible unless ...

3 year old, Cafe au lait spots?

  • By mednicole84 · New reply December 15, 2013
  • 11 replies
  • I took my daughter to the doctor today and I had him look at these marks that she has. There are about 9 of them. Six are on her back, One on her chest, one on her elbow and the other is right under her ...

At what age did axillary freckling appear?

  • By sunshine090909 · New reply December 11, 2013
  • 16 replies
  • My daughter is four now and has axillary freckling on one side only. NF is not diagnosed (yet???) since she has got only 2 CALs (on the same side). I suppose it could be segmental. So I hope it does not ...

hair loss

  • By express · Posted December 9, 2013
  • 0 replies
  • hi My eight year old daughter has nf1. She has a plexiform tumour on her spine which resulted in a spinal fusion last year. No cancer detected 2 years ago but recently her hair has been coming out in ...

Brain Stem Glioma

  • By JMcDonald · New reply December 8, 2013
  • 14 replies
  • Hello everyone. My four year old daughter Annabrook was recently diagnosed with a brain stem glioma. Everything that I have read sheds very positive light on brain stem gliomas IN NF PATIENTS ONLY. A ...

3 and half daughter with 1 Cals, and two hyperpigment area

  • By worrylove · Posted December 1, 2013
  • 0 replies
  • my 3 and half year old daughter get 1 Cal (0.8CM, as shown in left in my profile pic) at one year old, one hyperpigment area (0.3CM,too small to tell shape/even color or not) at two years old, and another ...

NF in Kansas

  • By GrandmaLorrie · New reply November 25, 2013
  • 6 replies
  • Looking for someone in the Ottawa or Topeka or surrounding areas in Kansas that is also dealing with NF in their family. Looking for info and suggestions on hopsitals and doctors or any advice. Would ...

HELP!!Doctors needed

  • By Cayli · New reply November 23, 2013
  • 4 replies
  • Hi I have posted here and was before and got great feedback. I was just wondering if anybody could possibly help with doctors for NF1. My daughter has the tumour in her tongue and base of her mouth. I ...

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