Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Hello, My son, named Noël, who is almost 9 years old and has bilateral perisylvian polymicogyria, is facing hip problems at the moment. due to his spasticity, he now has a hip luxation on the right side. They expect it will get worse and that he will suffer pain as soon as bone touches bone. Their solution then is to remove the head of his hip bone! But if they do that he can never stand on that leg again. So no more walking in his gait trainer and no more standing in a stander for the rest of his life! Things that he loves to do. I cannot believe that this is the only way to solve his hip problems. Does anybody have any experience with this? greetings, Mabel from The Netherlands, mother of Noël, BPP, visually impaired and epileptic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Molly is 5yrs old had has had both hips subluxed for several years, now the right is fully dislocated. We have been able just to watch and wait, continuing with standing activities. As long as she's not having pain or issues with positioning in her wheelchair, we will likely continue to watch and wait. We have an orthopedics appointment next month, so we'll get more feedback about surgical options at that point. I would be very concerned with your docs recommending such a radical procedure when your son isn't having any real issues with his hip at this point. My thoughts would be, why limit his activities so significantly when he's NOT having any pain from the hip right now. Can you get a second opinion? LoRene, mom to Molly (5yrs, BPP) To: polymicrogyria From: mvetswensson@... Date: Mon, 15 Mar 2010 07:53:45 -0700 Subject: hip luxation NEED HELP Hello, My son, named Noël, who is almost 9 years old and has bilateral perisylvian polymicogyria, is facing hip problems at the moment. due to his spasticity, he now has a hip luxation on the right side. They expect it will get worse and that he will suffer pain as soon as bone touches bone. Their solution then is to remove the head of his hip bone! But if they do that he can never stand on that leg again. So no more walking in his gait trainer and no more standing in a stander for the rest of his life! Things that he loves to do. I cannot believe that this is the only way to solve his hip problems. Does anybody have any experience with this? greetings, Mabel from The Netherlands, mother of Noël, BPP, visually impaired and epileptic Quote Link to comment Share on other sites More sharing options...
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