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ChericeThomas

Malrotation/pain in scar area

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Hello, mom to left sided CDH survivor born on 5/23/2002 He has had no issue with his CDH post repair at birth. Small things here and there, slight pigeon chested when he was younger, GERD, hydrocele repair at 9 years old. Over the last few weeks he has said he has pain in the area around his scar site. We finally took him in because the pain was going from irritation with him, to pain. THey said he was constipated. Sent him home. I didnt feel comfortable with this, and requested an Xray. THe xray showed significant impactment of the large bowl, bowl is malrotated with pssible volvulus. CT to rule out. We rushed him to the ER, did the CT, they said no volvulus, just malrotation and impaction. We were sent home with miralax, and wait a surgical consult. We met with the surgeon whom actually did primary studies on CDH, so he was the first doctor post the docts prenatal, that knew a lot of info on CDH. I was beyond impressed. and relieved someone finally "gets" him.
So.. we are continuing the miralax, the pain, may be that he went from growth charts at the 25% to the 95th% within the last year. He is growing fast, and they think the pulling he feels is the scar tissue and muscles that are sewn in pulling at the rate of his growth.
Now. question. did you know your CDH survivor, or you if you are the survivor, know that you have malrotation, and also that your appendix is misplaced? That was news to me about the appendix. If he ever has pain in random abdominal gotta watch out for that, cant point out where his appendix is because he has malrotation. scary thought. Also, has anyone had the malrotation surgery "LADDS" procedure as a teen or adult? this far out from his CDH repair at 2 days old.
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