Neurofibromatosis Support Group

What good will the test do? Is it really expensive? You can simply tell your daughter when she is old enough to understand. The Dr if he/she is any good will help you to explain. As far as being labled, labeled as what? HIPPA laws prohibit your medical information from bein shared without your knowlwdge and/or consent. About the time you begin to explain the birds and the bees you can begin explaining schwannomatosis. Try talking to her about it in small steps. Start with talking about yourself, then when the time comes you will have laid the foundation for discussion about her. Hiding it from her will jump up and bite you in the end. I hope I have explained well. I sometimes o off on rants. . Have a blesses day.

realistically if your daughter is already noticing she is different, and is asking questions about these tests she is getting then now is as good of time as any to discuss medical problems she already has or will one day have. it is a lot easier to accept if you have time to process these things rather than having them sprung on you all at once. I knew about my diagnosis of nf from a much younger age than your daughter. I was not much older than your daughter when i started making a lot of my own health care decisions. don't worry about any silly label. they mean nothing. all a lable is, is an opinion. you and your daughter will be the ones who deciede if you choose to accept the lable or not. personally i choose not to accept any labels put on me. other people are wrong and dont know any better. only i know what i am capable of. and too bad for other people because they missed out on the oportunity to get to know me. you and your daughter dont need people in your life who try to lable you. don't hold your daughter back, my parents let their fear hold me back, and i missed a lot of opportinities

I think it is a good idea to get your daughter tested. It is better to know then not to know. Plus, if the tests come back with the results you are expecting you can then better plan on what to tell your daughter. It is not that she is different, she just needs to be careful.

thanks for your help , what i wanted to do is when i get my own test back then get my daughters done , but i was afraid that i was doing it for selfish reasons , i mean for my own piece of mind but i'm now nearly sure i'll get it done. thanks again.