myotonicdystrophy
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Registered: 03/11/06
Posts: 334
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Reply with quote | #1 |
From: Julie
Category: myotonic dystrophy
Date: 06 Oct 2001
Time: 17:20:03
Remote Name: 216.180.203.58
Comments
Hi everyone, Arielle just had her yearly MDA Clinic last week. As my husband and I had predicted her feet and ankles had gotten worse. The UBLC braces that she has worn for the past 1 1/2 years did not help her pronation. As a matter of fact in the past 6 months we had seen a tramatic difference in the way she was walking. She is alot more pronated and her ankles are causing her some pain as well as her knees. She will be getting SMOS to see if this will help maintain her pronation and flat feet. She was also found to have a 1 inch difference in her leg length, so her hips are now becoming more lax and starting to cause a curvature in her hips and lower back. SO we are going to try putting a lift in the right SMOS and see if this will help. If not she is looking at hip bracing and possible hip and knee surgery in a year or two. Has anyone elses child experienced these issues with having to use orthotics? I would love to hear how they are doing and compare notes. Arielle also has a little more shoulder strength loss also this time around. We will continue to work with her and keep her going. Oh, yeah, she is going to be tested for a language learning disability the school is finally agreeing with me that there is a problem in this area for her. So keep her in your prayers, she has been going through alot these past couple of months. Take Care and God Bless you ALL. Julie W
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Richard Weston |
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myotonicdystrophy
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Registered: 03/11/06
Posts: 334
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Reply with quote | #2 |
From: Donna
Category: myotonic dystrophy
Date: 27 Nov 2001
Time: 11:00:38
Remote Name: 216.161.67.3
Comments
My son Gabriel was not able to walk until he had AFOs. He started walking soon after that. He is 3 and on his second pair. There does not seem to be any improvement with this second pair. He is scheduled at the MDA in January so we will see what else might be done. We get his shoes at Stride Right. They always have something that will fit him.
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Richard Weston |
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myotonicdystrophy
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Registered: 03/11/06
Posts: 334
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Reply with quote | #3 |
From: Jill
Category: myotonic dystrophy
Date: 07 Nov 2001
Time: 21:26:47
Remote Name: 64.12.105.46
Comments
My son, Joey, is now 4 1/2. He has been wearing DAFO's since age 2, not long after he started walking. They don't allow him to toe walk or back knee and keep him in a good heel/toe pattern of walking. Wish he didn't have to wear them as they just cause more stares, make it more difficult to get some of his pants on and off and are hot in the summer. We keep him in long cotton socks so the plastic is not against his skin. We have had luck with wide width shoes and taking out the padding in the shoe to make more room for the braces. He is on his 3rd pair. If your insurance won't cover them, I understand that MDA will pay for one pair/year for kids.
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Richard Weston |
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myotonicdystrophy
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Registered: 03/11/06
Posts: 334
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Reply with quote | #4 |
From: Richard
Category: myotonic dystrophy
Date: 26 Oct 2001
Time: 18:55:08
Remote Name: 204.178.98.81
Comments
Hi All, Chris has used AFO's both standard and articulating over the years. He did have heel cord surgery which we debated over and this proved successful so that he was able to walk and then we added on the AFO's. These have helped him. Wthout the braces he tends to do "toe Walking" and does not stretch his muscles. we also have him at PT as this is an important part of his therapy. W have to change the AFO's every few years. Somethimes it is hard to find shoes and boots to fit the AFO's in. We have not had issues other than this. One year we had to have a custom pair of shoes made. Hope that helps!!
Richard
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Richard Weston |
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katy
Senior Member
Registered: 11/04/08
Posts: 12
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Reply with quote | #5 |
I got AFO's recently and LOVE them. What a difference walking for me. I also got New Balance Roll Bar sneeks, the AFO's fit in them well, and they have Velcro closures. |
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