Living with NF Community Group

This group is designed for those who have NF, family members with NF or if you have friends with NF. We are all here to support each other like one big FAMILY.

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deleted_user 06/23/2008

hi, our son has nf1. he just turned 13. We live in Canada. Our son has a tumor in his brain that we keep an eye on through MRI and have been every year since we found out at about 3 months old or so. Where it is situated they say it is in-operable. The tumor has not changed any over the years, just gotten a little bigger but doc says that is normal as he is growing it will as well. Now that he is a teenager I was wondering what we should be looking out for, as I heard this can be an awkward time. Any feedback would be greatly appreciated.
Thanks
Sharon

deleted_user 09/11/2011

Hi Sharon,
Our oldest son has NF Type 1. He is 14 years old and was diagnosed at age 9. We are also in Canada. We are often lost as to what to do to help him or understand everything. So far he is healthy and tumor free. We are currently waiting for his next MRI to make sure. Hope all goes well for your son.

deleted_user 10/09/2011

Hi Sharon what type of tumour is it my son is 5 yrs old and he has an abnormal growth in the basal ganglia region of his brain(also know as the internal capsule) at first they thought it was a tumour i would be interested in hearing from you

e4now 11/10/2011

hello...im sorry everyone is going through such a tough time...my heart goes out to all of you..im sorry i dont have the answer...i have NF2... tumors in my spine and back that are intertwined into my nerves,had surgery nov1 last year to remove two tumors that were chocking off my spinal fluid, but the rest of the tumors remain...i just had an MRI on nov 7th will get the results on the 15th of this month...this is scary issues to battle we all need to be strong...im glad we have this group to come to for support reassurance encouragement and understanding

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