Thank you for the insight. I have talked to my daughter about notifying shriners and there is one in Boston, not too far from us. I am glad to hear that each...
I took my 2 year old daughter Ruthie (elbow and wrist arthrogryposis) to Scottish Rite in Dallas yesterday and they recommended wrist surgery where they would...
Has anyone with an infant that has arthro ever experience swelling at all? If so, did they know the cause and what course of action do you know they took,...
Scottish rite is a great hospital that's were they been seeing my son since he was 3 days old . I really recommend u put your daughter in there hands although...
Check out http://www.shrinershq.org/hospitals/main/ 100% free service. They will transport you for free too. Excellent service. They have dealt with...
Hi Ginnie! Reading your post was like reading what our 2 year old son, Aaron, just had done here in San Antonio in July. He also has Arthrogryposis affecting...
Thanks Lisa. I would love to continue to hear how your son does. One thing I wanted to make sure is that Ruthie will still be able to flex her wrist for...
Ginny, My son also goes to Scottish Rite in Dallas, the people there are nothing short of angels on earth. He had surgery in March on his feet and the whole...
My only advice is talk to your doctor about the pros and cons of waiting a year. A recent Mayo clinic study has linked multiple surgeries before the age of...
Now that his left wrist is in the neutral position, we are doing ROM exercises that he's not too crazy about. I think flexion will come in time, however, his...
Lisa- So is he not able to actively flex anymore? One of my concerns too is that they are going to cast her above her elbow and I am worried that she will...
Dear Danette, First of all, congratulations for your grandson. My best to you and your children. I have a daughter, 10yo with AMC, AMyoplacia (clubfeet,...
Danetta, Congratulations again on your new bundl of joy. I know your family will be getting all kinds of suggestions and ideas. My oldest child who is now 13...
hello im sorry i havent responded i didnt find my password i would like to share pictures with u if you would like...my son is the same way he is very...
Hello Sandi thank u for the advice this is so true only we know how our kids feel and what they really need we know them better than any doctor best of luck. ...
Yup, our Son is 4 and it was always a battle to get him to eat. He's very picky, but will opt for a spinich leaf over a sweet. I guess that's a good thing. The...
Yes, the feeding problem is common. I have twin boys, one with AMC and one without. The twin without eats like a horse, eats whatever you put in front of...
Hi my name is Steinunn and im from Iceland. Im 35 weeks Pregnant and the doctors found out when i was 22 weeks pregnant that something was wrong because the...
My son was born with Arthrogryposis, please check out our blog at baby-Jackson.blogspot.com & amcsupport.org, lots of great ppl Willing to help there Sent from...
My Bonnie was born at 35 weeks with arthrogryposis. We also knew about it before her birth. Although scary, it did get easier. She is quite the kid now! She...
First of all our best wishes for your upcoming baby. My daughter was not diagnosed before birth. I had a c-section because I was not going on labour, giving...
our son has it in his knees too. He was late, 44 weeks and he did not have to stay in the hospital after birth as it's not a life threatening thing, or...
Hi Steinunn. Welcome to this group.. Just to let you know I lived in Iceland Reykjavik for one year in 1986, have so many great memories of your beautiful...
Thank you so much for that Kelli Peasley . Yes its nice to live in Iceland. My boyfreind is from Ireland and he thinks its very nice to live here. The doctors...
I am sorry to hear about your diagnosis, and I know that it is hard for you right now. My son Jack was born with Distal Arthrogryposis, and at first he...
Does anyone know where to buy CHEAP elastic waist pants but that have an easy to open fly for boys? At an easily available place, not a specialty store....
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