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my son has pseudarthurosis of his tibia does anyone have this too or have had it or knows of anyone that has.....only 8% of ppl with nf1 have this so i'm told...
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does anyone know more
12 replies
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- Newest first
- By birdiebabee
- Posted June 23, 2009 at 12:57 pm
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My 2 year old has a badly bowed left tibia.
- By mumsword
- Posted June 24, 2009 at 2:14 am
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my sons is in his right leg too. have you had the op. that fixes it, but saying that i know it can come back in 10years after op..
- By birdiebabee
- Posted June 24, 2009 at 3:00 am
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I have heard there are special rods they can surgically place that will grow with your child.
- By mumsword
- Posted June 24, 2009 at 9:33 am
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thanks they are external fixaters on in october they take 2cm of bone away and i have to wind it 4 times a day. but they say it could come back in 10years... find it so hard at times..
- By birdiebabee
- Posted June 24, 2009 at 11:05 am
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ugh...that's horrible...the clinic the kids I have go to said there is a children's rehabilitative service clinic in Cincinatti Ohio with an AWESOME doctor who specializes in NF orthopedic surgery. However, he is retiring soon :-( My kids are my foster children so it's unfortunately not up to me if his leg gets surgically repaired or not.
- By sweetiecat
- Posted June 24, 2009 at 1:58 pm
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This too sad. Foster children desrve the best health care that anyother child does. It's not their fault they are in the system. uhgg..
- By birdiebabee
- Posted June 24, 2009 at 2:01 pm
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They do deserve the best care and normally get it but the ortho said its elective surgery right now and not required unless his leg breaks. AND hopefully within the next 6 months they won't be in the system anymore and we have them forever.
- By sweetiecat
- Posted June 24, 2009 at 2:09 pm
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That will be wonderful birdebabee. The best of luck!
- By Dancer43
- Posted June 24, 2009 at 4:05 pm
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Yes my son who inherited my NF 1 was born with this condition in his right leg. He has worn a leg brace since he was about one year old. He is 13 now and still wears a brace. When he was about 11 he had surgery in which they placed a rod in his leg. It has helped it a lot. I am hoping one day he can be out of the brace but the doctor doesn't really know when. His leg is a lot straighter now, however his ankle is still a little deformed. But he manages very well, he just can't play any sports.
- By mumsword
- Posted June 25, 2009 at 2:39 am
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i would like to say a big thank you i have been on my own in this leg thing for 2 years now with no one to talk to thank you alfie has the best doctor in his feild mr bradish his was at birmingham childrens hos but moved to london he has taken our case with him he is now in great ormond street childrens hos. so i hope for the best. thank you ones again too you all x
- By Dogsrule
- Posted July 3, 2009 at 11:04 am
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I had this,. My leg was put in cast at 8 months old to protect it. It broke in a cast. I have jhad 18 operations on it since then that lead to amputation. With this problem once the leg breaks it never mends. The bones grow apart not together. Even with bone graphs. As I had bones were taken form both hips at different ages. I had pins, rods, nuts and bolts, fixaters, was in a cast for up to 3 years for each operation as it takes years to mend if at all. Then it breaks all over agin. Mine broke with pins in it too. Amputation was suggested many times to my patents but they rejected and choose operations and to brace the leg. The brace kept the muscles from growing and the cast kept my foot from growing. my foot was 4 sizes smaller than my "good" leg. theleg was 3" shorter from the cast and braces not to mention cery painful. I developed a bone infection from the pins and had no choice but to ampuate my leg 6' below the knee. Odd since this was the the option as child and teen. This would have been a much better choice as a child. The more pain a amputee has before amputation the greater pain they have after amputation, I can say this is very true. This is a very complex and serious life long priblem. I wish you all the best.
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