Neurofibromatosis

by **uncledon2-18** on Thu Aug 02, 2007 7:21 pm

Good Evening,
I will get right down to business. Serious stuff..
I have a 4 year old grandson with many "Cafe au Lait" brown spots. He has been diagnosed with Neurofibromatosis My 46 year old daughter and his mother is not handling it well at all. We don't know as yet whether it is NF1 or NF2.

It has just been discovered that he has a tumor on his right optic nerve and has lost 90% of the sight in that eye. We were told that eye is not recoverable. For all practical purposes, it is gone. His spine is being MRI'd this week due to his still walking on his toes, and complaining of pain when he walks on his whole feet.

Right now my daughter is reluctently putting him through all these tests. The father is in the picture, but does not volunteer to participate unless asked to do so. He's kinda on the sidelines.

My problems are many, but my primary problem is how to get my daughter started in a NF support group so she can see what might be coming and what support, medical, and schooling options are available to her to assist her and her son through what is probably coming at them.
Right now she is refusing to search out and attend support groups, and her husband is balking at her attending some of the NF seminars due to her seeing some worst case scenarios. I spomewhat agree with him. If she sees some major facial distortions, I am really really afraid it could shut her down.

Any suggestions anybody. Where or how do we start?? We are all scared to death as to where this NF will take us and the ramifications to our daughter and grandson. Hellppp!!

uncledon2-18

by **curt** on Mon Aug 06, 2007 10:41 am

Very serious indeed. It sounds like your daughter needs some help from a mental health counselor and perhaps some medication to help her through this rough time. She needs to know that ignoring the problem isn't going to make it better. If she sees the worse case scenario then she can be grateful her son isn't that bad. She (and her husband/father of your grandson) need to remember that they are the parents and it is their responsibility to take care of him. He needs their help right now, both of them can feel sorry for themselves and mourn later. Good luck, sounds like you may need to take charge.

by **snowbear** on Wed Aug 08, 2007 9:04 am

Hi I have NF1 and iam new here! I had pseudoarthrosis of thr tibia with many unsucessful operations since infancy. I developed a major bone infecton and had to have my leg amputated 4 years ago. With this bone problem the bone breaks easily and almost never mends or takes years as longe as 3-4 years. I was in a cast or long brace all my life. I have many brown spots on my back and sromach and very small tiney raised lumps that are hard to see. But they are there. I under stand the concerns of this vicious thing called NF..Iam the only one in my family with this and Iam the youngest of 8 children and many nieces and nephews it has not come around again. I have NF from a mutated gene, just the spin of the wheel. Any way just wanted to say hello.

by **valerie** on Sun Aug 19, 2007 12:50 am

Hi, I am new to this forum. I am 41 yrs. old and have NF1. Both of my daughters have NF, along with my mother and sister. I just lost one of my daughters in late April of this year related to problems with NF. Also my sister was diagnosed with stage 3 cancer in early April of this year. I will say this to you, PLEASE take it seriously. Your daughter really needs to be there for her son and deal with this now. My daughters death could have beed avoided and I am willing to share what happened if you are interested. I am trying to help others by telling my story, so that what happened to my daughter maybe won't happen to another child. Just send me a reply letting me know.

by **viviane** on Thu Jan 03, 2008 5:35 pm

hi,
very new at this, dealing with a dear friend that is in denial, 29 yr old great guy that was just told about the condition by a general doctor, but doesn't wanna seek further help, really angry. we live in dallas tx, anu support groups? any advice? very sad for my friend, wanna help. thank you, viviane

by **iza** on Wed Jan 30, 2008 4:33 pm

Valerie I would really want to know you story! Thank you.

by **snowbear** on Wed Aug 20, 2008 6:19 pm

Please tell your daughter to log onto the Childrens Tumor foundation or the NF discussion board. She will meet many parents with simular situations. And find out information.

by **misdiagnosed** on Wed Jan 07, 2009 12:21 am

valerie i am sorry for your loss. I too lost my 13 year old son january 25 2002 i too would like to hear your story. and i also feel bad for all the other posts i have been reading.

by **Blaster** on Sat Feb 21, 2009 10:57 pm

Hello All...
Just joined a few Min. ago...
Me... 45 yo male with NF1. 1,000+ tumors, several CALS, Lisch nodules, Etc.

As snowbear said... there are other BBs with great people... ctf.org and nfinc. are two I am sure there are others....
I am Blaster on both BBs.

Good luck....

by **snowbear** on Sat Feb 21, 2009 11:13 pm

[quote="Blaster"]Hello All...
Just joined a few Min. ago...
Me... 45 yo male with NF1. 1,000+ tumors, several CALS, Lisch nodules, Etc.

As snowbear said... there are other BBs with great people... ctf.org and nfinc. are two I am sure there are others....
I am Blaster on both BBs.

Good luck....[/quote]

Their is also anothe one called INSPIRE ...Its nice too. I wish you all the best with all my thoughts.