Sunday, April 12, 2009


we have been spending lots of time reading up on short bowel syndrome and TPN-dependent kids.  Though Ryan is off the TPN now, he isn't gaining weight and I'm not convinced they won't restart it soon--either way, he will need TPN again at least after his reconnection surgery in a few weeks and for who-knows-how-long afterward.   He is not tolerating the TPN well at all (based on his bilirubin--which is 15--way too high, the reason he looks so yellow) and from what we are reading, it's due to fat accumulation in the liver--in some kids this can lead to liver failure.  It's possible that the liver doesn't tolerate the fat infusion part of the TPN that's available in the US (it's called Intralipid).   There is some research into a product called OMEGAVEN--a fish-oil-based fat infusion that's not FDA-approved here, but is used in Europe.  It seems that using the Omegaven instead of the Intralipid can stop the liver damage related to long-term TPN use in some kids.  There is a hospital in Boston that uses it on a compassionate-use basis (meaning they get special permission to use a non-FDA-approved drug for a special circumstance) and sometimes other hospitals have used it, including a couple hospitals on the other side of the state.

The Boston Globe recently wrote a story highlighting Omegaven.
This blog is about a little girl whose life was saved with Omegaven.

We are looking forward to asking the surgeons about this.  march of Dimes is spending research dollars looking into Omegaven as well for babies like Ryan--last few weeks to donate or to join our walking team!!

1 comment:

  1. We wandered across your blog today and just wanted to let you know that if you or your doctors need moreinformation on Omegaven or need help getting it, we can put you in touch with Dr. Puder in Boston. He has helped a few hospitals wade through the paperwork to get approval to use it locally.

    Our son has been 100% TPN dependant since birth. We were told that he would most likely ot live to be a year old. He started showing signs of TPN Associated Liver Disease at 3 months old. Sam started Omegaven in August of last year and just turned 13 months old. He is now a healthy, energetic, happy little boy.

    Please feel free to check out our website, You can also contact us through the site.