Hey all been since Aug. since I posted last shane has started to walk thank the lord kicks his longer right leg out to the side a bit but walking great!!!! Went to the Ortho today DR. said the word ampatee I lost it shane is15 months old he has a shorter left leg right now 4cm but Dr. seems to think it will be much worse as he gets older said shoe life not an opption and might be able to lengther one leg and shorten the other but not sure if that would help or hurt how do they know at 15 month how much longer or shorter his leg will be by the time he stops growing???? Right now my little man is walking getting into thing and is my perfect little boy but the dr wants me to concider chopping off his foot no decision now but do some soul searching he says... Dr reffered me to Shriners lucky its in the same state (just on the other side of it though) as me but this year has been for crap both my husband and I are out of work don't know how I'm paying any bills forget christmas for my 3 kids then the dr tells me shanes going to be foot less I'm not sure how much more I can handle would love to talk with some parents that could have some insite for me.... do I take my little mans leg now when he has his hole life to get used to having a prosthsis or wait till he almost stops growing to do lenghting and shorting and may still need to appatee his foot or may be it won't be as bad when he gets older how is someone supposed to determ that now when your watching your son walk play climb and can't barley tell somethings wrong with his leg till you take off his cloths and stretch his legs out side by side to see any difference!!! I'm going crazy I can't even imagin shane foot less it hurts so bad!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! e-mail and yahoo is sassycountrygal25@yahoo.com and also have a myspace page at sassycountrygal28 where I have several pics of my family and little man
Comments
Re: little man shane
I would recommend getting a second opinion from the Shriners. But there are others here who have done amputation and were/are fine with it. You can find a list here http://www.pffd.org/profile/pffd_treatment/Amputation%20with%20Extenstio...
Sharing experieces
I would normally msg people privately but i think it is really important to share our experiences and i remember being in your position a little over 3 years ago and had very little response from people when i wrote on here so here goes.
Our daughter Jess was born in Aug 2003 with bilateral PFFD class D (It's about as a severe as it gets.) She was given a diagnosis at 13 months but till then we had no name for her condition. In May 2005 we were told that amputation of her feet and prosthesis was the best option for her. I am sure that you are one of the few people who really 'KNOWS' what that feels like. It broke my heart and i went into shock. We requested a second opinion which we finally got in the October and that Dr came to the same conclusion. We talked and prayed a lot and in the Nov went back to see the surgeon and in January 2006 Jess had her surgery. It was a really tough experience and i hope she never has to go through anything like that again. Jess was 2 and a half when she had her surgery and i would say if you don't want him to remember it i wouldn't leave it too much later than that. I don't know how your medical system works in the US (we're in the UK) so i would definately seek as much advice and as many opinions as you can because you have to be certain WHY you make the decision you do because when he's older your son will ask you why, either way.
So what will the future hold?? I wish i knew :) Jess is a lively and very funny 5 year old who loves school, has lots of friends and a younger brother who tries to wear her prosthetic legs (It's hilarious). She uses her wheelchair very skillfully (it took a little practice) and whizzes around all over the place when she doesn't have her legs on. She has started to walk independently on her prosthesis this year which was amazing. Being bilateral and having no hip joints, it was pretty impressive.
All i can say is you're not alone, Kids are resiliant and they bounce back so much quicker than we ever would and they're pretty tough. Keep asking questions and you'll find the answer. God Bless Jo X
More oppinions!
I would definitely recommed seeking more oppinions. Shriners, also the doctors at Sinai in Baltimore (International Center for Limb Lengthening). Whatever you decide, your son will adapt and do great! These children are amazing!!! Good luck!!!
Hope
I think you should go for a second opinion. my son has the same problem. He has been treated by Shrinners since he was 3 months old. They are the best. They offer you everything from shoe lift to surgery, and the cost is 0. They are a no profit organization. Even transportation to the hospital they can help.All the question you have they will have an answer for it. Call them, you have nothing to lose. I also found another doctor that is considered the best doctor in the area of lengthening, his name is Dror Paley. He is now at the Mont Sinai hospital in Baltimore but is a rumor that he is relocating. I saw him in march and have planning to do my son lengthening in July. When I first found out about my son I was very depress, but now I see it different. Plus science and medicine chances every day, maybe tomorrow they find sometime new that can completely chance your son's condition. Advise from a mother that went the same road you are going right now. don't do anything that can't be changed in the future. read this boy's story http://ourherojacob.com/2007/12/29/update-december-2007/. Doctors also wants to ampute his leg and Dr Paley offer him a different choice. my email is vyodock@gmail.com in case you need anymore info. good luck