NF2 and children

Information and support for parents of children with neurofibromatosis type 2 (NF2).


Good Bye NF

GoodByeNf (Inactive)
  • By GoodByeNf (Inactive) · New reply February 26, 2014
  • 41 replies
  • Hi my name is Susie. I am a mother of four children. I have a very long history of this disease. My grandfather had brain tumors and passed in his late twenty's. My mother was 36 and died as well my aunt ...

Intramedulary spinal cord tumor

  • By twotwinsm · New reply February 17, 2014
  • 13 replies
  • We found out on October 1, 2013 that my son has an intramedullary spinal cord tumor from approximate c1-c5. My son is currently 12 yrs old and with no symptoms. We have limited to no resources here in ...

22 living with Nf

  • By kitacutie · New reply January 10, 2014
  • 18 replies
  • hey i'm kita 22 of age just lookin for ppl who i can relate to! I have Nf2 and spots ...

more nf1 popping up

  • By sweetness24 · New reply January 6, 2014
  • 9 replies
  • When I was young in my teens I knew about my condition but it never was noticeable. Now that im 24 and had a child who is one. It seems I see more and more. When I was pregnant my tumors seemed darker ...

Seeing results Please Read This

  • By Ssusie · New reply October 4, 2013
  • 9 replies
  • So I have long history NF2 with this my mom her dad my brother now my two boys. So I HAVE AMAZING News please read this. All tumors are created from a over acidic body. Raise the alkaline. My two boys ...

Cafe spots disappeared

  • By ejsmom · New reply June 5, 2013
  • 6 replies
  • My son was said to be borderline NF because he had 1 less cafe than needed for diagnosis. He was 3 at the time. He's now 5 and about 6 months ago, I noticed his cafe spots are gone. Oh, BTW, the spots ...

Newly Diagnosed 6 yr old Son..brain surgery in a week

  • By Emdorphin1 · New reply April 29, 2013
  • 5 replies
  • We just found out my son has NF2. He has the bilateral vestibular schwannomas and a large multilobulated meningioma in his skull base and another schwannoma close to the large one. He has surgery scheduled ...


  • By Shantelle_P · New reply April 16, 2013
  • 4 replies
  • Hello, I just joined this forum today and am just digging into some of the stories and debates between people discussing NF2 in children. I have four children,, my youngest was diagnosed at three years ...

'Normal' relationship with a para

  • By send2renee73 · New reply April 11, 2013
  • 2 replies
  • Ok... This is the topic closest to my question... My boyfriend is an incomplete quad (tetraplegic?) due to NF2. We have tried products such as viagra, levitra, cailis and caverject. None of these have ...

My 11 year old has just been diagnosed

  • By kripsen · New reply January 17, 2012
  • 19 replies
  • Hi there everyone, I was wondering if anyone out there would be able to identify with the situation our family has just found itself in. Our little boy has recently lost the sight in one eye due to a ...

Coping with nf2 in my 11year old son

  • By rvhblack · New reply October 13, 2011
  • 4 replies
  • My son is 11,12 in september! In november of last year he had surgery to remove his largest tumour on his hearing and balance nerve, leaving him deaf on that side. His latest scan results were bad,and ...

Correlation between Epilepsy and Gentic NF-2

  • By mmannlb3 · New reply May 24, 2011
  • 1 reply
  • Recently my cousin (male, 4o years old) and his wife had their third child, she is now 9 months and just diagnosed with Genetic NF-2. She has numerous tumors in her brain, including each of her eye sockets ...


  • By rhebajuno · New reply May 15, 2011
  • 5 replies
  • I took my son to the ER the other night because he was crying and said his ear hurt so bad. I was afraid it had something to do with his tumor and wanted to have it checked right away. While at the ER ...

want a baby!

  • By Amys78 · New reply April 18, 2011
  • 4 replies
  • We are desperate to have another child and have had testing on the sperm and NF2 is not detected tho if in less than 10% it could still be there - anyone else gone through this ...


  • By rhebajuno · New reply March 11, 2011
  • 5 replies
  • My son (8) has recently been diagnosed with NF2. So far they have found 4 tumors (left optical nerve, one by each ear drum and one at the top of his spine). If anybody has information that could help ...

Boston Childrens Hospital

  • By atlantic · New reply March 8, 2011
  • 13 replies
  • We are headed to Boston Childrens on March 1, 2011. We have an appointment with Dr. Scott Plotkin. We are also driving to John Hopkins to compare the 2 multi-disciplinary clinics. The latest MRI did not ...

Avastin and children

  • By Chat · New reply March 4, 2011
  • 1 reply
  • I don't speak very good englisch. Please excuse me We have appointment with oncologist in order to discuss possibility to use avastin in our 12 year old son. You already heard spoken about use of this ...

Assistance with setting a Foundation

  • By JustCourage · Posted January 4, 2011
  • 0 replies
  • Happy New Year Everyone- I have a 9 year old son living with NF2, and he has been hospitalized since July 9, 2010. He has undergone 2 surgeries to remove a type 2 Meningioma tumor wrapped around his thoracic ...

URGENT - Questions and Assistance

  • By JustCourage · Posted October 10, 2010
  • 0 replies
  • Good Morning- My 9 years old son was diag. with NF2 and Meningioma 2 in July. He was diag. after undergoing 2 emergency surgeries. Prior to surgery the M2 tumor had done so much damage by wrapping around ...

NF2 - sperm tested

  • By Amys78 · Posted June 23, 2010
  • 0 replies
  • We have recently had a test done to see if NF2 is found in sperm - this has come back clear :)) However if it is present in less than 10% it can't be detected. Has anyone else had this test ...

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