Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
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.
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.
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
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.
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