Information and support for parents of children with neurofibromatosis type 1 (NF1).
- By Jonesgirl · New reply 6:56 pm
- 1 reply
- I am unsure at what age to tell my daughter about her NF1. I have a complete honesty policy with her but I can't imagine how to explain this condition to her as she is only 8. I would appreciate any insight/experience ...
- By ashernietiffany · New reply 6:53 am
- 1 reply
- can anyone help me with any ideas ihave three kids and they all also got nf1 my ex hubby blaming it on me but he knew long before we had kids what the changes were with each one i tried to tell him it ...
- By shellbell4045 · New reply November 27, 2008
- 4 replies
- Im in school right now studing to be a medical assistant, and for part of our grade, we had to do a report on a disease, so I figured why not do one with a disease that I am familiar with. Wow, I was ...
- By yadida82 · New reply November 25, 2008
- 4 replies
- I have NF1 since I was a child but I really need to know if my son of 3 years old have it. That's why I traying to find a doctor specialist in NF1 near my area Miami ...
- By sunshinechild · New reply November 25, 2008
- 8 replies
- Hi everyone, Today is one of my bad days. I am worried about my daughter, who had a couple of headaches again. She had two on friday and one on saturday. Some of her symptoms she has had in the past with ...
- By LauraJ · New reply November 24, 2008
- 3 replies
- Let me first start by reminding people about my 3 1/2 yr old daughter. She has 6 CALS that are small but large enough to count. She has no other symptoms so far so we are just watching her. About two ...
- By mommyone · New reply November 24, 2008
- 4 replies
- my dd will occasionaly gag and vomit when she smells an order- bowel movement, wet bathrooms (swimmingpool). any relation to nf ...
- By Jennifer83 · New reply November 24, 2008
- 9 replies
- I am going to be calling my daughters doctor to get a base line MRI done. I know that I definitely want to to a brain MRI but what about a full body? Gracelyn is not having any complications from her ...
- By Cara_B · New reply November 24, 2008
- 9 replies
- My 13 month old was just diagnosed with NF1 although her pediatrician suspected it when she was 3 months old. Up until this point she was just labeled failure to thrive. I know that NF1 children are generally ...
- By nfinpgh · Posted November 24, 2008
- 0 replies
- My 5 year old daughter was diagnosed with NF1 when she was three. The only symptoms were thet two indicators which diagnosed her (CAL spots and freckling under arms). Her MRI when she was 3, came back ...
- By svitla_ya · New reply November 24, 2008
- 5 replies
- Hello!! I am Svitlana. I live in the capital of Ukraine, in Kyiv. We have a dother - she is 4,5 years old. In her 7 months we detected some small spots on her chest. We visited pediatrist. He sad us that ...
- By 3boys · New reply November 24, 2008
- 1 reply
- My youngest son Matthew was seen at the U of M and they made the decision tht he had NF1 99.99% they offered the blood test to be sure and accepted, my insurance covered it thankfully. I recieved the ...
- By Calebmyboy · New reply November 23, 2008
- 4 replies
- I have a 5 year old boy with NF1 and have been trying to find a NF specialist on the West coast (we live in Las Vegas). Can anyone help with some info.?? Thanks ...
- By NFADULT · New reply November 20, 2008
- 6 replies
- Sorry I have been out of touch for a while. My Father passed away last week. Things have been a little crazy. It was one of those things where you knew it wasw going to happen...but not quite this soon ...
- By rivergrl21 · New reply November 20, 2008
- 7 replies
- My son (now 10 months old) began developing CAL spots by 6 weeks, getting new ones daily. He now has about 60 in all. We saw a pediatric neurologist who sent him for an eye exam and MRI. The ophthalmologist ...
- By froggy · Posted November 19, 2008
- 0 replies
- i inherited nf1 from my mom. i have 3 sister with it, 2 brothers with it5 nieces n4 nephews with. also my two girls have it the promblem is my youngest is going blind from it n will b needing chemo ...
- By Charles74 · New reply November 19, 2008
- 10 replies
- My son Tyler (3/08) was born with a congenital mass behind his left eye. A bioposy was done to determine the nature of the lesion. The pathology reports a plexiform NF1. It is impacting his vision on ...
- By Sethsgranny · New reply November 16, 2008
- 5 replies
- My grandson, who is almost 3, was diagnosed with NF 1 when he was a few months old. He had approx. 12 (I think) of the darkened spots (don't know how to spell the term). His mother and grandmother as ...
- By Jordy · Posted November 16, 2008
- 0 replies
- I am interested to hear if anyone has or knows of a child that has had the McFarland Bypass done to correct psuedoarthrosis. This surgery uses a cadaver fibula and is implanted in the curved tibia ...
- By aimee121477 · New reply November 14, 2008
- 11 replies
- Does anyone know if NF1 is linked to behavorial problems in children ...
