MalroMom

I'm so glad they are so proactive there! Malrotation is really a scary killer because it so often looks like the flu or a stomach bug, so often hospitals just brush it off as such. Since you're a pediatrician I hope you don't mind me sharing with you that often kids with malrotation and volvulus do not have abnormal blood labs. They did check my daughters blood several times and it was mostly normal or occasionally slightly dehydrated (slightly low sodium and potassium usually, and I think slightly elevated calcium and one other thing - but just slight). Amylase and lipase were always very normal (not sure what those really mean, but I do know the doctor said those can sometimes indicate obstruction). Even with volvulus her blood was very near normal, nothing they would have been concerned about. Her surgeon said he had seen this happen several times with volvulus because a lot of the necrotic fluid and tissue can remain trapped in the tightly twisted loop for awhile before it starts permeating out and effecting blood test results. Something to keep in mind if you ever come across it. Also worth mentioning ultrasounds don't always catch a volvulus, it did catch my daughters which I am so thankful about because if it hadn't I don't think they would have done further testing. But most are actually found by barium swallow which is about 95% accurate for catching it. Thank you StatsGirl!! She is doing so well now, which I am thankful for every day. I am so sorry your parents had to go through the same thing!! But it is a good reminder to all patients and caregivers that if you think your doctor is wrong, you really truly should keep fighting until you find one who will listen.

Stumbled across this thread while googling more information about the episode. Found it interesting that a pediatrician commented that the girls symptoms were not consistent with malrotation. My daughter had malrotation and I was always very worried and her pediatrician always told me I was overreacting because she didn't look sick enough. Took her to a pediatric GI and they said abdominal migraines. Took her to the hospital and they acted like I was crazy. Took her to a different hospital, where they also acted like I was crazy. Finally an emergency physician listened (or perhaps just tried to placate me), and discovered through ultrasound she had a volvulus. Surgeon opened her up and her intestines were purple and dying. She survived but barely. Not all children are in miserable pain. I've connected with many parents who have experienced the same thing, some who have even lost their children because of it. No one believed them because their kid wasn't "in enough pain". (Some kids are in A LOT of pain, but definitely not all).