Hi,

My son is 5 and just got fitted for night braces. I wanted to know how other boys dealt with them and did anyone see a big change? I did not know they were going to go all the way up his thigh. I thought they were only going to go up to his knee. Not sure if I am happy or sad about the change. We will do whatever it takes to help him. I think it hurts us more than it hurts him. So glad I found PPMD. Thank you ALL for your blogs and posts.

SINDY

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Comment by Sindy Boldizar on February 10, 2010 at 7:39am
Lisa,
My son only takes vitamin D. No steriods yet. I am going to have to talk to my son's Dr. He seems to be the only one to have braces that go up his thigh. We did not get them yet. They will be ready next week. I will keep everyone posted and please update us on your son.....Sindy
Comment by Lisa Guest on February 9, 2010 at 10:56pm
Hi, my son wears night braces but they go just under his knees. He enjoys wearing them and reminds us each night "I need my night time shoes on". But I fully understand it hurting you more than hurting him. I cried my self to sleep when he first started wearing them most nights. He is doing well at the moment... are they helping? hard to say but he has improved since his last visit to the hospital and since he started wearing them, but then we are praying harder than ever too! I live in Australia and wonder at times if treatment differs here than elsewhere. What treatment does your son have...Steroids? heart medication? Naturopathy? would be interested in everyones story. My son was diagnosed last year at 3 1/2 years. Bye for now.
Comment by Darcy Tumminello on February 4, 2010 at 8:59pm
My son did good with his when he was younger. He will be 8 this month. He has been refusing to wear or to stretch.
So frustrating because he's doing well. When we put them on, he takes them off and it becomes a fight.
Comment by Sindy Boldizar on February 4, 2010 at 12:22pm
Laurie,

Gregory's thighs are tight, so the Dr. thought he would benefit from this. If he won' t wear them or takes them off I will talk about the shorter one. I would like to thank all of you for your input. I will keep you posted....Sindy
Comment by Allyson on February 4, 2010 at 11:12am
My son's braces are about midway between the upper ankle and knee. While we have had no issues with him wearing them (meaning no complaints from him) we have had issues with them staying on. Our son's feet just slip out the back while he is sleeping (he is a mobile sleeper). So the braces are back with the maker for a correction. We were sad also when we got them, then realized they would do benefit. But when his feet started slipping out we got nervous that we were doing him harm instead so we stopped using them. I'm hoping this fix will work!
Comment by Susan Rathfelder on February 3, 2010 at 10:53pm
My son will be 19 in March. When he was first diagnosed (he was 9) we had a pair that the PT's made and he wore them without too much fuss and I think that and the stretching helped. Eventually he started refusing to wear them and refusing to stretch. He has had 3 pairs now and all 3 went up to his knee. He did do a few rounds of serial casting a couple of summers ago and that helped, but since he wouldn't stretch or wear the night splints he has lost the range he gained. He is a big kid so I was able to fin in the latest pair, and to be honest I could only take them for about 5 minutes and I don't have tight heel cords.

Susan

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