What is Neurofibromatosis
Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
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My 8 year old son has nf1 and not coping well.
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Hi All,
I haven't been on here in awhile. Glad to be back. My son is 8 years old and has just had his 14th operation. He has been having operations since he was 8 months old. Cause of the nf he had part of his bone missing in his leg and numerious spots. Every operation requires his leg to be cut open from knee to ancle as well as bone grafts taken from his hip. He has 2 rods inserted in his leg to help support the bone and these have to be hammered back down in his leg each time. However this time around he is not coping with things very well. Come to mention it, eaither am I. He get frustrated very easly, and angery. He has an attitude to match, which dosent help. He cant understand why it's happening to him and why he can't be like a normal kid. This gets us both down and I have no answers for him. I don't know what to say or do to make things better for him. I care for him 24/7 as after op's he can't do a thing for himself. I would love to hear from other people or families in a simmaler situation, for their advice and support. PLEASEEEEEEEEEEEEE. Posted on 11/16/08, 09:11 pm |
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my son has nf, but i can not relate to you on the surgeries.
I can say that anytime you want to talk i am here to listen. i constantly worry about wht it will turn into for him, and people ask about his spots, but nothing else really. i am sorry he has to go through all of this, and i know as a mother, how it pains you too. all i can give you is my support when you need it and to tell you that i am here. 
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Hiya, my son Kieran has pseudarthrosis of his right tibia. He turned 3 years old on Sunday. So far he has had one operation with the metal rod being inserted and on his last check up it was still in place and extending as it should. I think he will need another operation next year :(
Your little brave boy is a normal child and you have to work with him to make him realise that. I can't imagine the stress and strain you have all been going through. All you can do is carry on being a caring wonderful mum. If only we could take the pain away :) Hugs - Wendy
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hi my 2 yr old daughter has nf 1 and is having chemotherepy for 2 optic gliomas. so far she has had a year of treatment and has hopefully just another year left. but there is a possibility the tumours may return. The worry is gut wrenching. i can relate to how being in and out then in and out of hospital drags you down and life feels like it revolves around the hospital. Spencie23
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Thanks to all that posted a reply. It's really nice to know others care and are going through simmalar situations. Big Hugs to All, Thax.
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All I can say is talk to him.....about everything.... hold him...hug him just for being there.....l know you love him...but never stop telling him and showing him .....take it from someone who grew up with the frustrations and anger your son has.....my parents did the opposite of what you are doing for your son....they never talked about my NF... never really got me any help for it....and my father let me know just how much couldn't stand the way I looked .....I may be a totally different person that I am today had I had the support you are given your son.....always show and tell him you love him...it makes all the difference....God Bless..
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