tag:blogger.com,1999:blog-2556530923850418331.post4782627545233480855..comments2024-02-21T16:52:09.540-08:00Comments on A Life Less Ordinary: Night Bracing SummaryAmyhttp://www.blogger.com/profile/00105042832608271631noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-2556530923850418331.post-57764648742875282522013-06-18T18:10:32.242-07:002013-06-18T18:10:32.242-07:00Me again, is there any possibility you can have Dy...Me again, is there any possibility you can have DynaSplints for each leg each night? Might help to have the splint on both legs since whatever leg is not being splinted probably just tightens up. <br /><br />btw I had my adductors done. Certainly helped but my knees still turn in. Adductor surgery only helps with the upper half of the legs I think.Margothttp://cripvideoproductions.tumblr.comnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-10864753583073483022013-06-14T05:28:12.089-07:002013-06-14T05:28:12.089-07:00Loved reading your blog. With regards to orthopaed...Loved reading your blog. With regards to orthopaedic surgery, Adductor lengthening is known to have lots of benefits, lengthening the adductor longus, the adductor GRACILIS, and sometimes the brevis, with key hole surgery can help, the muscles of the inner thigh, muscles of the groin. It can interfere with growth spurts but has been successful in teenagers aged 16 or 17 in some case studies I have read, I think the hospital for Special Surgery in New York in Manhatten does these procedures, and children's hospital in Delaware. I had this done as 22 year old adult with diplegia, changed my life.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-65529405684100093632013-06-12T20:28:07.754-07:002013-06-12T20:28:07.754-07:00I give you both so much credit for sticking to it....I give you both so much credit for sticking to it. I could never get through it with my daughter. Having her not sleep and me not sleep, was a disaster, but it is so important. I saw a slight difference with her heels seeming to be more consistently down and to the floor by the end. <br /><br />My daughter, 8, has done this intensive therapy called Adeli every summer the last few years for 6 weeks, two hours a day. At the end of the last one she took about 30 independent steps. Slow, CP steps, but beautiful. Now though, 12 months later, with growth and botox and life, she can't take more than two. Its just so constant with such small gains. I feel for you.<br />Patty<br />http://www.parentingoutsidethelines.org/<br />Pattyhttp://www.parentingoutsidethelines.org/noreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-20825155315254360172013-06-12T19:50:38.103-07:002013-06-12T19:50:38.103-07:00I saw some improvement from the back view but from...I saw some improvement from the back view but from the side view it looked the same as before. If you're having success with the DynaSplint stick to that since like you say it allows her knee to move. From my experience whenever a joint is immobilized it creates more spasms, not less. Margothttp://cripvideoproductions.tumblr.comnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-74283524658205615962013-06-12T10:21:06.607-07:002013-06-12T10:21:06.607-07:00I've been through night bracing before similar...I've been through night bracing before similar to Elena's (I also have SDCP), and to be honest, got pretty much the same results. I couldn't tolerate the knee immobilizers, and many times I would wake up during the night and take them off without even realizing it, so that in the morning they were halfway across the room. I didn't see any sort of significant difference until after I had hamstring lengthening at 15- I hadn't realized how tight I was until the surgery relieved some of the spasticity, and then I was able to tolerate the night splints much better. My point is, you have to be loose enough to tolerate the night splints- to be braceable, if that makes sense, because otherwise they'll just be uncomfortable and won't work. Maybe stretching right before bed would help? In my case, only Botox or surgery really provided any significant relief to the point where night braces were useful to maintain the effects.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-20220827726976283872013-06-12T05:32:33.829-07:002013-06-12T05:32:33.829-07:00HI AMY
BECAUSE OF MY VISION ISSUES I SOUND IT HARD...HI AMY<br />BECAUSE OF MY VISION ISSUES I SOUND IT HARD TO SEE A DIFFERENCE, HOWEVER, I DID NOTICE IN SOME THAT SHE WAS STANDING NICE AND TALL<br /><br />MELISSAAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-59998796627604761352013-06-11T14:01:44.884-07:002013-06-11T14:01:44.884-07:00On some it looked like a huge difference, from day...On some it looked like a huge difference, from day to day, as I want it to be, (sorry I'm not objective about such a sweetie)but maybe that was when she thought about, or responded to 'stand up tall". I'll share with some (adult care) P.T.s I know who might be more objective?Catherine Ciara's momnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-74213816623831274722013-06-11T12:13:07.070-07:002013-06-11T12:13:07.070-07:00I felt like I saw a pretty big difference, but I v...I felt like I saw a pretty big difference, but I voted for the second one which was small but significant. I felt somewhere between the top two. I do see what you're saying about a meager results for the effort spent, though. I felt like the most dramatic improvements happened early on but stayed pretty steady.Kristinehttp://allthethingsinthewrld.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-52431197234486768552013-06-11T09:27:22.844-07:002013-06-11T09:27:22.844-07:00A good night's sleep is so very important (Goo...A good night's sleep is so very important (Google "importance of sleep" for a flood of info) that I would be loathe to continue something that interrupts Elena's sleep most nights. As someone who has suffered from extended periods of nightly sleep interruption and the inability to sleep deeply and comfortably, I can tell you that you may look like you are continuing to function fine, but it takes its toll on concentration, mood, learning, and health. Even if she insists on continued bracing, I would insist on a break and have her compare how she feels now with how she feels in a few weeks when she is back to better sleep at nights.Anonymousnoreply@blogger.com