Good morning, For any families who may need it: The Kya's Krusade Financial Assistance Program provides grants to children with physical disabilities for the...
The 3rd Annual Arthrogryposis Convention is just 4 weeks away, if you plan on attending or are seriously considering it, read below to make sure you have done...
AMCSI is coming to Dublin Ohio July 17-20th, 2008!!!!! Go to _www.amcsupport.org/ohio_ (http://www.amcsupport.org/ohio) for all the details! This will be our...
?We are excitingly getting ready for our 3rd annual AMC Convention~ & cannot wait to meet many of you who are attending! Its in 4 days!!!! July 17-20 in Dublin...
Thanks Lori! I sure wish you, Everrett & Masha were coming!! I miss u guys! I'll deff take loads of pics & they will be posted after the convention!! ~Theresa ...
I HAVE to tell you all that didnt get to attend the 3rd annual Arthrogryposis multiplex Congenita Support, Inc Convention in Dublin Ohio last week missed out...
Hi everyone. I am wondering if any kiddos w/ amc have also been diagnosed with sensory integration disorder? Or are sensory issues just a side effect of the...
Some things may present as sensory integration but aren't. My son is still in diapers because he can't tell when he needs to go. That is due in part to arthro...
beki@...
Aug 5, 2008 4:47 am
2769
Just? read this post and I am wondering if toilet issues are common with children with arthro?? My son is 7 and I can't seem to get him toilet trained no...
M71665@...
Aug 6, 2008 3:00 pm
2770
I am wondering what kind of doctor told said "most of the time its a problem with the parents not wanting to take the time to take their kids"!! Is he just...
It can very well be. It's not always, but i can be. My son has horrible constipation which he takes mirilax for daily. He also can't sense when he has to go...
beki@...
Aug 7, 2008 2:11 am
2772
These are interesting comments. I'm not sure if this is in the same vein, but I have noticed that my daughter Naomi, who is almost 2, is very sensitive to...
It is funny you should bring this up. I have three children and my son, who has AMC, is highly sensitive to cold and hot as well. My other two are not. Ice...
Hi everyone! Can anyone tell me about your experiences using an Ilizarov external fixator?? Masha's AMC is fairly mild, but she has a significant contracture...
... I have never heard of this sensory integration disorder before. Emma is 10 and has always been a "wriggler". She does this thing where she starts...
My son received his first power wheelchair at 3 yrs. old. He did very well with it right away. Our pt recommended it and we requested it through the insurance....
Bonnie- I am still new to sensory integration and trying to learn. I had 2 students with the disorder this year, so I was trying to understand it better....
My son with AMC has significant sensory integration issues, especially with food textures and temperatures, touching things with his hands, etc. I have to...
Cristin- That's very interesting ... My wife and I are reading your description and nodding our heads in unison. That exactly describes Naomi's reaction to...
Tom, Our daughter Juliet is now 9. She learned to walk at age 2 1/2 but did get a power chair at age 3 after a couple of go rounds with the insurance company....
MARK & MARY HEINEN
mmajch94@...
Aug 8, 2008 3:21 am
2781
So no one on this list has used an external fixation device to remedy contractures?? Iliazarov or other?? No screws into bond, no rings, no adusting the...
My AMC child (18 months) just has orthotics. But, I did use fixation devices for arm contractures with a foster child who had severe burns and an amputation. I...
I know I have seen others talking about this device. I will try to go back in my history and see if I can forward you some e-mails. It is possible that...
Tom: My son has an Invacare Pronto M71jr. My son has no muscle in his legs whatsoever. He is unable to stand, walk or even scoot. He also has no ability to...
Thanks! Well, as I put in my original post, I am interested in hearing about the logistics of daily life-- what it's like to care for, getting her dressed...
Hello Sharee, I am Dimitra from Greece, member since 1999. My daughter, age 9, has used Iliizarov twice. For different joints. Both of the occasions were much...
Cristin- Thanks for the information, we will consider it carefully. The more thought we give this, the more I regret not having thought of it sooner. That...
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