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Optic Nerve Chiasm Glioma and NF1

Posted by on Nov. 16, 2009 at 11:33 PM
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In June of this yr my 2yr old daughter's left eye started bulging out a bit, I took her to the eye doctor and he sent her to UNC in NC to see a specialist, they did an MRI and diagnosed her with Optic Nerve Chiasm Glioma.

She had a Large tumor behind her left eye and along the optic nerve to where the optic nerves meet at the brain, and along the right optic nerve.  The only option was CHEMO, because the tumor was so large and some of it was close to the brain.

So on Aug 3 she started chemo, and has been doing quite well with it, the tumor on the chiasm has shrunk some ( the part at the brain) but the rest remained the same.  She will get more MRIs in FEB to see if the chemo has shrunk the tumors any more.

Now about the NF1 my mom, sister and niece all have NF1, my mom has the all over her body, and my sister has about 10, and my niece is starting to get them on her back.

I told the doctor this and he is going to do a blood test on both of my girls to see if they have that gene, he said more than likely my 2 yr old has it. 

I just wanted to find a group the had to do with NF1 so I could learn a little more and share my story.

by on Nov. 16, 2009 at 11:33 PM
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Replies (1-3):
U.S.ArmyWife
by Member on Nov. 17, 2009 at 10:13 AM

i'm sorry to hear about what you are going through. having a 15 mo old little girl, diagnosed a few mos ago with NF, i can understand. she has an appt. next month to see a ped. opthamologist. i'm nervous about what their going to say and do.

MySweetGirls2
by New Member on Nov. 17, 2009 at 4:39 PM

Hope all goes well for you and your little girl. 

Aley51102
by Group Owner on Jan. 6, 2010 at 1:28 PM

most often it is very rare to have malignate tumors with NF usually those cases are where there is another disease in the family. NF does mutate alot but its usually not harmful. I have seizures and only 1 tumor which is smaller than a pea. these all started when i started bc so i would encourage anyone with NF not to take BC to try a different method.

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