Kids with CP, Muliple Disabilities Seeking Advice & Informaton

Christine - posted on 04/16/2018 ( 3 moms have responded )

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We have a 13 year old who has seizures, doesn't walk or talk, operates at a 1 year old level, has a feeding tube, CP, and various other issues... but he is the happiest child, in no pain and so loving. He is my sunshine. His hips are not forming a socket and one hip has about 53% dislocation. They want to do derotational femoral osteotomy on both his legs. I say no. He doesn't walk, and is no pain. Surgeon says up to 30% of the kids don't ever have pain or need the surgery, they just do it to all of them because they don't know which ones are the 30%. Others I have spoken to, regret it... lost their happy child. I don't want to do the surgery until he is in pain. I feel it will traumatize him and he will be like the rest of them who cry all the time, won't roll, and be happy & loving. As long as he is not in pain, I don't feel the need to cut him up. On top of it, he could have other complications with the seizures. :( Anyone out there have had this done to their child? Can advise if it was worth it or not? Anyone who opted out? Any information is helpful while I weight the options. Thank you all in advance.

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Michelle - posted on 04/16/2018

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Like Sarah has said, go with your gut. You are his Mother and know him the best. For his own quality of life you know the best choice.

Sarah - posted on 04/16/2018

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As mother, a nurse and a school nurse to a large SN community, my advice is to trust your gut. If the risk of the surgery outweighs the benefits at this time; then you are perfectly right to say no

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Christine - posted on 04/16/2018

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Thank you, that is how I feel. My gut says no... If the feedback was 80% positive on this, or I knew he would benefit in someway to walk... I would knowing it was best... but I just know in my gut and my heart this is not for the best.

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