As many know, next years Arthrogryposis Multiplex Congenita Support, Inc convention is being held in Philadelphia, PA. Just released...........the dates...
Yes my name is Denise Duhamel I am a 31 year old with Arthrogryposis. I live in Mass and just found out about the up and coming convention in 09. I am very...
Denise, 1st of all, AMCSI does not have a fee to attend convention. attendees are responsible for their own travel, hotel & food. 2ndly, please email...
email pa @ amcsupport.org (remove spaces) to be added to database for updates on the convention and the like. Hope you don't mind I posted this again Theresa,...
THANKS TRACEY!!! I would have never noticed that!!! ~Theresa In a message dated 10/28/2008 5:34:11 P.M. Eastern Daylight Time, tracey_schalk@... writes: ...
I want to talk specifically to people that have had this surgery, or have had their children have this surgery. I want the good, the bad the ugly. I also want...
I have no info about this. But I know a lot about g-tubes. My AMC daughter (age 22 months) has one, but so does my non-AMC son. He's 18 and has been tube fed...
I am looking for ways to get my daughter to eat orally and not always be tube dependent. Currently her jaw only moves so much. It is stopped by her back teeth...
Jeff eats by mouth , the tube is for medicine, he started of not eating but by the time he was four he could eat everything by mouth. He has a limited...
Thanks for your response. My middle son is named Jeff! So Jeff didn't have a weak swallow associated with muscles but rather bone issues? Bonnie loves to fish....
My daughter has weekly feeding therapy -- it's a subspecialty of speech therapy. Before we started it she had to pass a swallow study. That's basically a video...
Bonnie cannot pass a swallow study. Her swallow is too weak and delayed. If she could swallow, she would eat. She tries to eat everything. As far as feeding...
I'm 19 years old, born with arthrogryposis. I can't bend my knees all the way only 45 degrees or 40 degrees. I have other phisical problems but they dont stop...
We take our daughter to Dr. Robert Fitch at Duke University Hospital in Durham , North Carolina. He is absolutely the greatest. She has also had surgery by Dr....
Hi. My daughter is 10, has AMC and wears AFOs. She's sposed to wear them 24/7 but b/c of skin issues we have discontinued night use temporarily on her...
What worked for us was domboro---mix it following the directioms on the box...and fyi the colder it is the better it works...you can buy it at the local...
Hi I was just curious where in your childs feet are they bleeding? Are they pressure points from the AFOs or just skin breakdown? Maybe the AFOs are not...
Hello Everyone, Hope that you and your loved ones are doing well. I am looking for help on a special item. My daughter's swimming teacher has been asked to...
This is a question for those who are 50+ and older. I seem to be having problems with keeping my eyes focused due to lack of eye muscle. I have worn glassed...
Does anyone have recommendations on where to find shoes that fit over the HKAFO braces? Our dr. did not know. We have some New Balance tennis shoes but would...
keeping pace!! They are great! Donna From: angela82462 Sent: Monday, February 23, 2009 2:30 PM To: arthrogryposissupportgroup@yahoogroups.com Subject:...
Hatchbacks are my pick, my Daughter just got them for Christmas and they even come in Mary Janes so she doesn't have to wear tennis shoes to church! To:...
I started a Yahoo group for those with AMC and g-tubes and/or trachs as we have very unique issues and circumstances. It will be a closed, protected, moderated...
Hi I have a boy who is 10 yrs old with arthrogryposis who is my pride and joy...I'm pregnant with my second child ,i was reading on line about arthrogryposis...
I am wondering what most of you do that have girls with braces in the summer time? We live in TN and it gets VERY hot here in the summer. I cannot imagine her...
Zayra, I have a 13 yr. mold girl with arthrogryposis and a 8 yr. old boy with out. Emily in Texas ... From: zayra delgado <delsweet2003@...> Subject:...
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