Author Topic: Share What's on Your Mind  (Read 19264 times)

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Share What's on Your Mind
« on: January 20, 2009, 07:15:35 AM »
If none of the other boards fit a topic you want to discuss, share your thoughts here.  :)
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cheryl

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Re: Share What's on Your Mind
« Reply #1 on: December 27, 2009, 08:38:52 AM »
Does anyone one else on the forums have arthrogrypos or a child who does.  My child does and I am will ing to share what info I have on that particular disability.  Arthrogryposis is a congenital conditoion where the joints of the baby are frozen in various positions such as flexed knees, that won't bend.  Arms that won't straighten, dislocated hips or extended hips, club feet, vertical talus, micronathia, scolios, and muscles that didnt develop, there fore the joints didnt move.
It is not uncommon - 1 in 3000 births.  These kids do amazing well despite all these problems.  One doctors treatment is to fix the lower limbs and put the child in a position to walk and to see what happens.  We do have an online support group with resources and also forums @www.amcupport.org or www.forabby.com.
« Last Edit: January 21, 2010, 12:31:30 PM by admin »

Tina

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Re: Share What's on Your Mind
« Reply #2 on: February 19, 2010, 05:54:40 AM »
Does anyone else have a spouse that is dealing with a Vestibular Disorder.  This can be particularly debilitating to the person.  My husband has had luck with the medication in calming the dizziness and allowing him to work, however the loss of hearing has also been very difficult.

It was very important in the beginning to get medication and occupational therapy for balance.  Because he has learned to keep his balance using his feet instead of his sight, the slightest movement or bump or obstacle can cause him to go down.  If you are just now being diagnosed, occupational therapy and recognizing how to keep your path clear or learning what can trigger instability helps alot.