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--- Arthrogryposis
Bekki, First of all welcome to the group. This is a very supportive and informative place. I also have a special needs daughter. We know of a wonderful young woman who has something similar to what you describe as your son having. She is now in her twenties and she is a joy. I wish I could answer your question about the ROM but don't know anything about that area. I hope you find the anwers you need for your son. You sound like wonderful and attentive mom. debbie m. http://www.angelfire.com/ga2/angels1/ "Bekki" news:c0bd6c24.0406151915.63e7a44e@posting.google.com... > Hi everyone-I have a 5 month old little boy and when he was > born, the second thing I heard the doctors say was "his arms are > stiff". His wrists were so flexed that his palms touched the > underside of his arms, his elbows so contracted they weren't > even movable, and his shouldars also very contracted. No one > knew what is was, living in a small town and all. He's been > seen by orthepedics, neurologists, heart doctors, > geneticists...you name it. Finally we took him to Shriner's > Children's Hospital where he was diagnosed with Arthrogryposis, > the type he has is Amyoplasia. > I just have a couple of questions to anyone who knows about > this: His left elbow now is only able to flex at a 20 degree angle and > he isn't able to flex it on his own. The OT he's working with at > Shriner's said that if he isn't able to move it at a 70 degree flexion > at least by the time he's 18 months old then he'll have to have > surgery. We've been propping him and doing ROM with him to try to > increase the movement. I just wanted to know if anyone has any > suggestions on other ways to increase the ROM in his elbow. > Also he's working with some geneticists right now to try to figure > out why it is that he was born with this. They don't know of any > testing to find out if it's due to genetics...so I just wanted to know > if anyone knows of anything?? > Thank you very much for taking the time to read all of this. I > know > it's a lot! It would be really nice to hear from anyone. Thank > you again. > > Bekki > > I always dreamed of having "the perfect" baby and you know what? He > is...
I have no suggestions but the ones from others sound good. If there is some way of applying warmth to the joints before and even during the exercises it might help. If not the water idea, maybe warm towels wrapped around? I hope you all find more answers soon. What a sad and frustrating situation for all of you. > > I always dreamed of having "the perfect" baby and you know what? He > is... sounds like he did pretty good job of choosing his mom. -- Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Hi Bekki, I was referred here by a friend of mine. I think she got a giggle as our names are similar :) My son, Jason was born with arthrogryposis in May of 2000. I heartily suggest joining the two arthrogryposis lists on Yahoo groups. They are Avenues and Avenues2. I dont know where you live, but the two clinics that everyone seems to want to go to out of the six that have an arthro clinic in the country are at Seattle Children's Hospital and A I Dupont. They can do a complete work up and they can give you all sorts of ideas. Amyoplasia is one of the three types of Arthrogryposis. The Distal form is the only one that is genetic. My son and husband have one of the distal forms. The other form is neurogenic. As far as the rom goes, one thing that I have found to help loosen Jason up is put him in a bath of warm water. his muscles relax more. Do the Rom in the tub and you will get a little more motion out of him. Also, do the rom as play as much as you can. We did rom at every diaper change, and then we made games out of it to get more rom work in. Jason has a web page if you want to check it out at http://babiesonline.com/babies/j/jasontanner/ I am not sure if the photo gallery is still there or not. Babies online had a hosting problem for a while. Feel free to email me with questions. Beki b_ekk_i21@yahoo.com (Bekki) wrote in message news: > Hi everyone-I have a 5 month old little boy and when he was > born, the second thing I heard the doctors say was "his arms are > stiff". His wrists were so flexed that his palms touched the > underside of his arms, his elbows so contracted they weren't > even movable, and his shouldars also very contracted. No one > knew what is was, living in a small town and all. He's been > seen by orthepedics, neurologists, heart doctors, > geneticists...you name it. Finally we took him to Shriner's > Children's Hospital where he was diagnosed with Arthrogryposis, > the type he has is Amyoplasia. > I just have a couple of questions to anyone who knows about > this: His left elbow now is only able to flex at a 20 degree angle and > he isn't able to flex it on his own. The OT he's working with at > Shriner's said that if he isn't able to move it at a 70 degree flexion > at least by the time he's 18 months old then he'll have to have > surgery. We've been propping him and doing ROM with him to try to > increase the movement. I just wanted to know if anyone has any > suggestions on other ways to increase the ROM in his elbow. > Also he's working with some geneticists right now to try to figure > out why it is that he was born with this. They don't know of any > testing to find out if it's due to genetics...so I just wanted to know > if anyone knows of anything?? > Thank you very much for taking the time to read all of this. I > know > it's a lot! It would be really nice to hear from anyone. Thank > you again. > > Bekki > > I always dreamed of having "the perfect" baby and you know what? He > is...
Welcome to our group Bekki. My heart goes out to you and all you are dealing with. You hang in there and take care. Hugs to you. -- Love and hugs to all Good thoughts coming your way too. Squirrely Jo "Beki" news:98b5ea10.0406171951.5d6c6896@posting.google.com... > Hi Bekki, > > I was referred here by a friend of mine. I think she got a giggle as > our names are similar :) My son, Jason was born with arthrogryposis in > May of 2000. I heartily suggest joining the two arthrogryposis lists > on Yahoo groups. They are Avenues and Avenues2. I dont know where you > live, but the two clinics that everyone seems to want to go to out of > the six that have an arthro clinic in the country are at Seattle > Children's Hospital and A I Dupont. They can do a complete work up and > they can give you all sorts of ideas. > > Amyoplasia is one of the three types of Arthrogryposis. The Distal > form is the only one that is genetic. My son and husband have one of > the distal forms. The other form is neurogenic. > > As far as the rom goes, one thing that I have found to help loosen > Jason up is put him in a bath of warm water. his muscles relax more. > Do the Rom in the tub and you will get a little more motion out of > him. Also, do the rom as play as much as you can. We did rom at every > diaper change, and then we made games out of it to get more rom work > in. Jason has a web page if you want to check it out at > http://babiesonline.com/babies/j/jasontanner/ I am not sure if the > photo gallery is still there or not. Babies online had a hosting > problem for a while. Feel free to email me with questions. > > Beki > > b_ekk_i21@yahoo.com (Bekki) wrote in message news: > > Hi everyone-I have a 5 month old little boy and when he was > > born, the second thing I heard the doctors say was "his arms are > > stiff". His wrists were so flexed that his palms touched the > > underside of his arms, his elbows so contracted they weren't > > even movable, and his shouldars also very contracted. No one > > knew what is was, living in a small town and all. He's been > > seen by orthepedics, neurologists, heart doctors, > > geneticists...you name it. Finally we took him to Shriner's > > Children's Hospital where he was diagnosed with Arthrogryposis, > > the type he has is Amyoplasia. > > I just have a couple of questions to anyone who knows about > > this: His left elbow now is only able to flex at a 20 degree angle and > > he isn't able to flex it on his own. The OT he's working with at > > Shriner's said that if he isn't able to move it at a 70 degree flexion > > at least by the time he's 18 months old then he'll have to have > > surgery. We've been propping him and doing ROM with him to try to > > increase the movement. I just wanted to know if anyone has any > > suggestions on other ways to increase the ROM in his elbow. > > Also he's working with some geneticists right now to try to figure > > out why it is that he was born with this. They don't know of any > > testing to find out if it's due to genetics...so I just wanted to know > > if anyone knows of anything?? > > Thank you very much for taking the time to read all of this. I > > know > > it's a lot! It would be really nice to hear from anyone. Thank > > you again. > > > > Bekki > > > > I always dreamed of having "the perfect" baby and you know what? He > > is...
Bekki, Welcome to our group. I am sorry you have to be here. I am so sorry and my heart goes out to you to have to be dealing with your sons illness. I am sending prayers and good thoughts your way. Hugs to you. You take care of yourself so you are better able to help your son thru all this. -- Love and hugs to all Good thoughts coming your way too. Squirrely Jo "Bekki" news:c0bd6c24.0406151915.63e7a44e@posting.google.com... > Hi everyone-I have a 5 month old little boy and when he was > born, the second thing I heard the doctors say was "his arms are > stiff". His wrists were so flexed that his palms touched the > underside of his arms, his elbows so contracted they weren't > even movable, and his shouldars also very contracted. No one > knew what is was, living in a small town and all. He's been > seen by orthepedics, neurologists, heart doctors, > geneticists...you name it. Finally we took him to Shriner's > Children's Hospital where he was diagnosed with Arthrogryposis, > the type he has is Amyoplasia. > I just have a couple of questions to anyone who knows about > this: His left elbow now is only able to flex at a 20 degree angle and > he isn't able to flex it on his own. The OT he's working with at > Shriner's said that if he isn't able to move it at a 70 degree flexion > at least by the time he's 18 months old then he'll have to have > surgery. We've been propping him and doing ROM with him to try to > increase the movement. I just wanted to know if anyone has any > suggestions on other ways to increase the ROM in his elbow. > Also he's working with some geneticists right now to try to figure > out why it is that he was born with this. They don't know of any > testing to find out if it's due to genetics...so I just wanted to know > if anyone knows of anything?? > Thank you very much for taking the time to read all of this. I > know > it's a lot! It would be really nice to hear from anyone. Thank > you again. > > Bekki > > I always dreamed of having "the perfect" baby and you know what? He > is... 1 2 Next » Related Discussion: Mehtod of curing and diagnosing arthritis (2 posts) Health Benefits (1 posts) Lilly pens 75/25 (1 posts) break the breakout process of acne (1 posts) Top Discussions From Our Archives Synthetic Vitamins Do More Harm Than Benefit Diabetes Hikes Risk Of Liver, Pancreatic Cancers Stop Health Food Ban/Health Crisis Act Other Discussion Categories Diabetes Symptoms Health Care Policy Health Care Providers HMO Arthritis Symptoms
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