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Neurofibromatosis...

Posted by on Feb. 13, 2013 at 6:51 PM
  • 10 Replies
I just wanna know if anyone else suffers from this, becuz me, my sister, and my mom nd so forth all.have it so far my mom had it the worst nd had to have tumors removed , im hopeing this dont effect my baby as bad ..
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by on Feb. 13, 2013 at 6:51 PM
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Replies (1-10):
kmqw229
by Ruby Member on Feb. 13, 2013 at 11:38 PM
Bump
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Heather2001
by Heather on Feb. 14, 2013 at 1:58 AM

I don't, but here's a bump for you!

FinchsMommy
by Member on Feb. 14, 2013 at 11:10 AM
I havent been diagnosed with neurofibromatosis. However, I have had segment schwanomas on my spine in my nerve root. 4 years ago this coming August I had a schwanoma the size of a ping pong ball removed from my spine and chest cavity. Which has resulted in me developing a neuropathy in my arm, chronic pain in my neck and back and my first pregnancy complicated my previously controlled pain issues. I see a pain management specialist in the interim to try and keep things under control.
FinchsMommy
by Member on Feb. 14, 2013 at 11:10 AM
1 mom liked this
I probably should have said my child is fine. You should ask you OB to refer you to an OB specialist for a consult to get info. That's what I did. Helped calm my nerves and concern.
chickensmommy
by Member on Feb. 14, 2013 at 12:57 PM
Type 1 or type 2? Big difference!!
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x_Starr_x
by on Feb. 14, 2013 at 1:00 PM
i have a friend with it hers is not too bad her worst tumor is on her face she says sometimes there painful but she lives with it.
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Mrs.Andrews
by Mandy on Feb. 14, 2013 at 1:43 PM

I've never even heard of it. Good luck!

MamaCeleste0722
by Member on Feb. 17, 2013 at 9:43 AM
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Yes, my husband has NF1 as did his mom (she has passed away) and his brother. We have 3 kids, and 2 of them have NF as well. They do have some challenges-one has ADHD and the other has some learning disabliites, but are doing great with help. 

christinarb
by Member on Feb. 17, 2013 at 9:46 AM
So does nf cause adhd ?


Quoting MamaCeleste0722:

Yes, my husband has NF1 as did his mom (she has passed away) and his brother. We have 3 kids, and 2 of them have NF as well. They do have some challenges-one has ADHD and the other has some learning disabliites, but are doing great with help. 


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MamaCeleste0722
by Member on Feb. 17, 2013 at 9:50 AM

Not sure if I'd say it "causes" it, but about  60% of people with NF1 have ADHD. Learning disablities like dyslexia, fine motor issues are also common in people with NF1. 

This is what I found:

"he cognitive profiles of children with Neurofibromatosis Type 1 (NF-1) have many similarities to those observed in learning disabilities in the general school population, as well as some distinct features. Approximately 30-65 percent of children with NF-1 have learning disabilities; most commonly, they have language and reading disabilities, along with motor, visuomotor, and visuospatial deficits. Similar to learning disabilities in the general population, approximately 50 percent of children with NF-1 have Attention Deficit Hyperactivity Disorder (ADHD). In this article, the genetic and physical characteristics, the diagnostic criteria of NF-1, and the cognitive profile of children with NF-1 (including relationships between neurological abnormalities and cognition) are reviewed. Additionally, the types of educational interventions that would be indicated for children with NF-1 are discussed"

http://www.eric.ed.gov/ERICWebPortal/search/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=EJ687007&ERICExtSearch_SearchType_0=no&accno=EJ687007


Quoting christinarb:

So does nf cause adhd ?


Quoting MamaCeleste0722:

Yes, my husband has NF1 as did his mom (she has passed away) and his brother. We have 3 kids, and 2 of them have NF as well. They do have some challenges-one has ADHD and the other has some learning disabliites, but are doing great with help. 





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