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Posted by on Jul. 25, 2007 at 10:03 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

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 10:03 AM
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by New Member on Aug. 13, 2007 at 7:12 PM
Welcome, Jeanette!


It's a bit traumatic when you first receive the NF diagnosis, but after that it's time to get down to the business of preparation.

Be ready for:
  • MRIs and doctor visits
  • Learning disabilities (50%) (My daughter didn't actually have a learning disability, but her problems with fine motor control greatly interfered with standard classroom work.)
  • Difficulties with fine motor skills (my daughter didn't learn to write until she was in the 5th grade)
  • Delayed emotional maturation (this, along with the learning disabilities will often lead the school to believe your child isn't as bright as she really is)
  • Grief from other children
  • Sensitive skin and allergies
  • More love than you ever knew a child could give!
The two great websites to learn about neurofibromatosis are NF, Inc. and Children's Tumor Foundation.

My daughter is now 36 and doing great--in fact, she my publicist! 

Happy mothering!

Faery Special Romances
Royalties donated to Children's Tumor Foundation
ending NF through research
by on Feb. 7, 2008 at 4:19 AM
my dd is 4 just abut 5yr we knew within months of being born she had NF we try to go to gentic once a yr we do eye checks with eye docs that know what to look for in NF kids need to be dilated everytime my little one hates it we where doing it only 1x a yr and now she has stuff growing we have to watch so we are doing mris to watch more closer to make ure it not growing and not getting too big to binhder here sight too much also because of this we do eye check more too about 2 or 3x a yr (only way to treat is with chemo we are stable right now and wait and see game has begun) her fine motor  is fine but gross motor is hindered some because she has scoliosis found that out when she was 10 months of age been in a brace or a cast since. she very behin in speech and laugage wasnt really talking even a yr ago. most of it is a wait and see game the tumors she may get usally are not cancerous just a pain and can be removed. and she may or may not get any learn disablitlies.

get referred to a gentics clinic to get her checked out and get her eyes checked my son is just about 9 months and has NF also and the people we see in gentics wants him to get a eye exam soon so we have a good base line...the issues with my dd eyes mostly where not there yr ago, she had them check and he did not see anything so worry about at that point. so it was new in last yr they beieve..

Do you know if she has NF1 or NF2 that will make a diff on what you really need to watch for
mariah in frozen north
by on Feb. 7, 2008 at 8:47 AM
While all of the things the other posters can be true and can happen. You can have zero issues. The only thing that I had is the spots. I had zero learning disabilities, zero motor skill issues, zero eye tumors... my daughter who is 3 only has the spots. So far she is right where she needs to be learning wise, we went to the eye doc and she perfect vision no tumors. I know that this is not the case with everyone. I just want other mothers to know that just because you have NF1 doesn't mean you will be faced w/all the issues that could happen.
by on Feb. 17, 2008 at 7:05 PM
My daughter was diagnosed at 8 months with NF1 and i also have it. I'm lucky because for know I only have the cafe-au-lait spots and never really had any other  symptoms other than wearing glasses. My daughter just turned 3 on Valentines day and she already knows her abc's and knows how to count to 25 as well as all her shapes and colors. Her doctor's tell me that she is developing like a normal child for know. Hopefully she will continue.She also went to the eye doctor and hearing doctor and she see's and hears perfectly.
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