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JUST DIAGNOSED YESTERDAY!

Posted by on Jul. 25, 2007 at 10:01 AM
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Hi my name is Jeannette and I am a mother of 6.

My 22 month old  daugther was just Diagnosed yesterday July 24th with
Neurofibromatosis.

I have read up on it and am really frightened about it.. If you have some info I would love it...

I hope I can find some solis here....
by on Jul. 25, 2007 at 10:01 AM
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Replies (1-5):
MyBoyCarter
by New Member on Sep. 14, 2007 at 11:12 PM
Hi Jeanette.  I'm sorry to hear about your daughters diagnosis.  My son was diagnosed at 15 months of age.  It can be very frightening but you've probably already heard it is not common to have significant problems with NF.  Having said that, it is very important that you have all the necessary monitoring.  At the least annual MRIs, annual visit to the ophthalmologist and neurologist.  These are all a must in my eyes just to stay on top of any new developments.

You can read about my family's journey with NF1 on the website below.  It was far more frightening in the beginning when I was in the "gather information" mode.  You must realize that the majority of the cases online are the worst cases, otherwise they wouldn't be online.  No one shares the uneventful things.  You know?

Shawna
www.caringbridge.com/visit/carterrichardson

www.PreciousBelly.com

MomtoMandJ
by Member on Oct. 6, 2007 at 11:22 AM
Hi!  I'm 47 and have NF1 and have had only a few minor problems.  There are people in my family with severe problems, though.  The disorder really runs the range from mild to severe, and you can't really tell early on how it will be.  If you have any questions, feel free to ask.

Ana 
Lilypie 2nd Birthday Ticker

U.S.ArmyWife
by Member on Nov. 10, 2010 at 12:00 PM

hi. i just saw your post. i am sorry about your little ones diagnosis. my daughter was diagnosed at her 1 yr well baby check up. i was diagnosed when i was 13. if you have any questions, please feel free toask me. i will get back with you with any answers i have when i can (i have to go to my sisters to use the internet, because my mom does not have a connection.)


WhiteRose071406
by Member on Jan. 1, 2011 at 1:55 AM

Hi I just saw your post. I'm 26 and I have NF. I was diagnosis when I was about 1 year old. I was told that my case is what they call Severe. My brother also has it and has a very mild case.

My 3 year old was diagnosed when she was 12months old.. So far we haven't had any problems.


Aley51102
by Group Owner on Feb. 4, 2011 at 8:40 AM

i agree with shawna. it can be scary at first but with research & discussion comes information and with information comes power and knowledge. what type does she have? i was diagnosed years ago around puberty when they diagnosed my mom after my bro was born

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