If your child gets NEC there is a drug out there for it

[3 ladybugs]

My DH has been following this because all of our children have been NICU babies. There was a drug that was recently approved to treat NEC that should be available to all hospitals (not a trial or anything). It is an orphan drug so it doesn't really have a name, just a title.

However, if your child develops this HORRIBLE condition, please know that there is a drug out there to treat it. If your neonatologist says that there isn't anything, tell them to look again.

I couldn't in good conscience hear about this without posting it on every preemie board I come near.

Good luck to you if you are reading this.

[newtwinmom]

An 'orphan' drug?

Is the drug indicated for treatment of acute NEC or for use after NEC has resolved? What is it supposed to do (what is it's class- antibiotic, anti-inflammatory?) Do you know where we can get more info?

One of my 27 week twin boys developed NEC on the third day of life and had a bowel resection with ostomy placement so Im very interested

[3 ladybugs]

My DH is a pharma research scientist so this is what he told me (I got my degree in early childhood education so we are very different in what we do). He said that an "orphan" drug is one that the FDA approves for a set reason that effects less then (I think he said) 250,000 people annually. It is given some perks in that once to help a company want to market it. Often times these drugs are discovered only after they were abandoned after the market they thought they would work for didn't pan out. So for instance in this case it could have been a diet drug that didn't work out but it works in a way that will help infants with NEC. I don't know if this is what it is, but that is just a thought.

The drug (DH said it doesn't have a name like Advandia, it has a letter and number designation) is only approved for treatment of NEC at this time. So that is the only reason why someone would have it (so this isn't off label use of something like if a baby were to take viagra to help with blood flow issues).

My DH did say that he could find out the exact name of the drug quickly when I asked him but you will have to wait till he gets home for that. I am sure he could tell me how they think it works too.

None of our children died from NEC but we know we were very lucky. None of them even developed the condition (though I think it is rare for our 38 weeker to get it even though he was in the NICU). However my DH really didn't like the fact that he heard no drugs were out for this. So he has been following any stories on it so that is how he knew.

I will post more information when I learn more.