SCAD???

Question

Does anyone’s baby have the genetic disease SCAD? If so, what has it been like ?

Answer

My baby boy has MCAD, not SCAD. The diagnosis was a lot scarier than the day to day. I do always get nervous whenever he seems like he’s getting sick, since illness could mean a refusal, or inability, to eat. So far that hasn’t happened, but we keep copies of the emergency protocols that the specialist provided in the diaper bag and both our cars. As far as the day to day, it sucks that we can’t just let him sleep long stretches at night. It was stressful at first, setting alarms to make sure he ate often enough. But we got used to it pretty fast. 
SCAD requires more dietary attention than MCAD, since so few foods are high in medium chain fatty acids. So you’ll have to deal with enforcing a low fat diet as yours gets older. But that’s very doable. And there are actually ranges of severity, depending on how much residual enzyme function your baby has. Some babies with SCAD are relatively asymptomatic. Hopefully yours is! But these things are manageable. It’s scary to get the diagnosis, but your baby will be fine.

SCAD???

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