Malrotated intestines

[Guest guest]

Max was diagnosed with malrotated intestines when he was 7 months

old. He, too, had surgery to correct it. It can be lifethreatening

because the intestine can twist on itself and cut off a major

artery. While we were waiting for him to have the surgery, we were

told to look out for his vomiting bile. If that happened, we were

to immediately get him to an ER. So, if your child has not been

tested for this, then make sure you keep an eye out for the bile

thing. It is a definite warning sign.

I also want to mention that Max DID have extensive GI work-ups

before this was discovered. In fact, the malrotation was on the x-

rays just plain as day, but the radiologist missed it. It was not

until he was transferred to Columbia-Presbyterian in NYC that it was

discovered by the new GI who had taken over his case. He and we

were furious that this was overlooked.

Also, when he was diagnosed with this, just like reflux, it was

questioned whether or not RSS kids tend to have this condition. I

still don't know if it occurs in RSS kids any more frequently than

in the general population, but it's something to think about. We

now know that reflux IS an issue for many RSS kids.

Jodi Z

[Guest guest]

TJ Holec just had surgery for malrotation as well. And it was

missed for a long time, even by Dr. H and others. Surgery was

successful in Seattle while many of us were at the convention. This

is why Meribeth couldn't be at the convention! Jenn

> Max was diagnosed with malrotated intestines when he was 7 months

> old. He, too, had surgery to correct it. It can be

lifethreatening

> because the intestine can twist on itself and cut off a major

> artery. While we were waiting for him to have the surgery, we

were

> told to look out for his vomiting bile. If that happened, we were

> to immediately get him to an ER. So, if your child has not been

> tested for this, then make sure you keep an eye out for the bile

> thing. It is a definite warning sign.

>

> I also want to mention that Max DID have extensive GI work-ups

> before this was discovered. In fact, the malrotation was on the x-

> rays just plain as day, but the radiologist missed it. It was not

> until he was transferred to Columbia-Presbyterian in NYC that it

was

> discovered by the new GI who had taken over his case. He and we

> were furious that this was overlooked.

>

> Also, when he was diagnosed with this, just like reflux, it was

> questioned whether or not RSS kids tend to have this condition. I

> still don't know if it occurs in RSS kids any more frequently than

> in the general population, but it's something to think about. We

> now know that reflux IS an issue for many RSS kids.

>

> Jodi Z