Tuesday, July 21, 2009

Additional resources

Gastroschisis Support Group


Also:

Omegaven-

Omegaven is saving the life of baby after baby with Short Bowel Syndrome (SBS) or Short Gut. It is an omega-3 based lipid solution made from fish oil. It has been used in 100+ pediatric short-gut patients by Dr. Mark Puder and Kathy Gura at Children's Hospital Boston. The recently published data on the first 18 kids shows a complete normalization of liver function measures within a couple of months, 5 times faster than kids on omega-6 based lipids. The parents of patients on this treatment are convinced that this is the real deal -- a cure for TPN-associated Liver Disease.

  • This does not mean that it will reverse all liver damage. It can help children: avoid liver damage, recover from liver damage that they have received from TPN, and in some cases it helps stabilize and improve the overall health of the patient so that when they do receive a transplant they recover that much faster.

One very important point about the treatment: It takes roughly a month or two before lab results show clear improvements, and in fact the labs tend to get worse before they get better

Click here and refer to Faith's place blog (her daughter received Omegaven and avoided a transplant)