Hi there ! Last year we adopted our daughter and now we find out she has a baby sister and the biological parents would like for us to adopt her also which we would like to and are considering but we are checking to see her health first. She was born with a malformation of the feet. She's diagnosed with arthrogryposis but only her feet and ankles are affected. Her hips and hands are all normal. The therapist says that with proper care it can be fixed. She is going to get measured for some braces (ortheses) next week. How true is this ? Can it really be fixed ? Should I worry about anything else. Thank you so much.
i work at shriners hospital as an RN. this is a diagnosis that we see fairly often. there are varying degrees of severity of the diagnosis. if you live anywhere near a shriners hospital i would strongly suggest going to them for a consult. They could give you much more insight as to what to expect. i know there are a few other tests that should be done just as a precaution. these could all be organized through shriners. If you chose to pursue this and need help please feel free to contact me. As an aside, the orthoses can certainly help but are not going to "fix" the problem. The problem itself is the construct of the joint. It is still not anything to worry too much over. With the use of the orthoses there is a chance that she can run and play just like any other child. Good Luck!!
Arthrogryposis multiplex congenita (AMC) comprises of non progressive conditions characterized by multiple joint stiffness and rigidity found throughout the body at birth.
The life span of affected individuals depends on the disease severity and associated malformations but is usually normal. Discuss with a pediatric orthopedician after examination and diagnosis of her severity.
There are different subtypes and if she is suffering from distal arthrogryposis she will respond well to physical therapy with excellent functional outcome.
Thank you for your replies. Right now we are waitting for all the results of the other test they have done to make sure she does not have anything else with this. She is 4 months old. They have mention to us that if she needs surgery we would have to go to Ste-Justine or Shrinners. So far if nothing else comes out of the test it seems like a mild case of it. Her legs are perfectly straight, her hips are fine, her arms and hands are also all good. She eats well, sleeps well. So we are waitting to make sure that there is not anything else with this. She still has 2 specialist to see also. So far the outcome seems to be that with proper treatment her feet will be able to function "normally". I am praying that nothing worst comes out of this.
I absolutely 100% also recommend The Shriners hospital. I was also born with Arthrogryposis and ended up at The Shriners Hospital in Lexington, KY. I'm a rather rare case in that I was affected severely in my legs, feet, arms, and hands. All other hospitals told my family I'd never walk, but The Shriners were able to help.
I had three surgeries done on my feet (because one had to be re-done) to put them in the "planter" position so I could eventually walk. I was in what they call "long leg braces" --braces that fit all the way up to the hip-- until I was six or seven. From there I went to braces that stopped below my knees. At eight or nine years old, I was able to walk without them.
I was slow to start walking. A lot of that was probably from fear. I took my first steps around the age of two and began walking everywhere by myself around the age of four. Until I could walk I scouted on my bottom :) Crawling was out of the question for me since my knees are affected and dont bend.
I'm sure you can find a facility that will help her as much as possible. I know from experience that nurturing her in a way that lets her know she is strong and able to accomplish anything she sets her mind to will help more than anything.
And, ma'am, she is "normal."
If you have any questions for me (seeing as how I live on a daily basis with Arthrogryposis) PLEASE dont hesitate to ask. I'm happy and willing to answer any and all questions. Reply here or at my email which is lindsay.***@****
I have just found this website. My daughter, Tasmyn, has similarly affected areas of feet, knees and fingers. We have limited doctors with experiance in treating AMC in our town. So any info you might have with day to day stuff or therapy would be greatly appreciated.Tasmyn is 8 yrs old and is walking with crutches.
my brother was born with arthrogryposis over 45 years ago and has been living a great, pain free life with full mobility for years. just this past year however he has endured a ton of pain in his hip joints that is unbearable. he has been to different doctors to discuss hip replacement but those he has seen all say that it cannot be done with patients who have arthrogryposis. he has lost a ton of muscle mass in the past year and i fear that he is getting much too frail and thin. he says that he feels better than ever because he is seeing an accupuncturist regularly and is on a strict nutritional plan...but i am still wondering if there is some other alternative out there. when you mention shriner's, i am wondering if they might be an option for a patient in their late 40's. i am also wondering if testosterone might serve as a cure here for building deteriorating muscle back just like all of the pro athletes in the MLB that are getting suspended. Can it work for this as well since it attacks the joint and degrades the musles?
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