Optic Nerve Glioma

My son, Hoyt Lee, is 20 months old now and was diagnosed with NF1 at 3 months. On 2/14/12 they found an optic nerve glioma and he has been undergoing chemo since 2/21/12. They just did an MRI last week and the tumor has grown, it is a large one, and not responding to treatment.

I am asking for help on any information on where would be the best place to take him. I am looking for a Childrens neurofibroma clinic. I live in southern Kansas, but willing to go anywhere that I need to in order to save my sons eyesight!
Thank you

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I cant answer your question ShawnaO, but my prayers go out to you an your son Hoyt Lee.

Aloha,
Judy

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My 8 month old son has a malignant tumor in his brain they wanted to do chemo until the MRI showed it is on his thalmus so they won't do it. He was supposed to go to University of Arizona they are supposed to be the best my thoughts amd prayers are with your little one and your family.

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I came across this the other day. Going a bit crazy researching at the moment...just in case. It is a type of surgery that I think, looking at it, could be used. Have a look. http://brainsurgery.upmc.com/endoscopic-endonasal-approach/Pediatric_Brain. aspx. It says optic nerve compression can be treated...? - ask them.

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Oh thank you very much, very interesting. I will call and check into this! Thank you!!

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Shawna - I don't think this surgery would apply to Hoyt Lee. It talks about deep brain tumors and such, nothing about optic nerve gliomas. This does appear to be a benificial site - thanks for including me.

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Shawna - I don't think this surgery would apply to Hoyt Lee. It talks about deep brain tumors and such, nothing about optic nerve gliomas. This does appear to be a benificial site and I hope we can find some answers - thanks for including me.

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I just reread it and it does just say gliomas, darn, I was getting excited.

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There is a NF clinic in Oklahoma city. Also St. Louis...we live by Topeka and go to children's mercy hospital in KC and St. Louis once a year. My daughter got diagnosed with the same thing.

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Why not call anyway. Let us know.

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I live in OKC, my daughter has an appt in August, she had an MRI that showed concern and seen a neurosurgeon Tim Mapstone, he is a great Dr. The Contact info for the Okc NF office is 405-271-8697

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and I do pray things go well for you and little Hoyt

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I live in OK we go to childrens my son has tumors on both optic nerves we are going through treatment.

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There is a children's NF clinic in Chicago Illinois

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Thank you everyone! We just went up to Children's Mercy in KC. There is a new doctor there, Dr.Kevin Ginn. He has just spent a year at St. Judes and he has come to Children's Mercy to start a brain tumor program. I felt very comfortable talking with him and he spent a lot of time explaining everything on Hoyt's MRI's and taught me a lot about optic nerve gilomas in NF1 children.

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