Intestinal Fortitude: Healing a Child's Defective Liver

short bowel baby

We have a 9 mo old who has a short gut and liver damage from tpn. We are desperately trying to obtain omegaven for him in Illnois or Missouri with no luck so far. Does anyone know how we may do so without having to go to Boston?

Thank God for Omegaven

My child is in the hospital in wisconsin with short bowel syndrome and since he got started on the omegaven his billirubin has dropped to just about a perfect zero. i believe that omegaven should be covered by medicaid and every child who is on TPN should have the chance to be able to use this amazing product.

I hope they will be healed

Omegavin

My grandson would not be alive if he did not have Omegavin!! He was able to get to see Dr. Puder in time because of a web page for another Micro villus Inclusion Disease baby. I visited my daughter in Boston for moral support. I would not have believed the change in Sammy if I had not seen it first hand.

Some babies may have other options, Sammy didn't. I wish more doctors would let their patients know of this option instead of brushing it off as useless. How many babies were sent home to die just because the doctors didn't believe that Omegavin is that good!!! I will not stop spreading the news of this life saving treatment.

Denise-

First thing I would do is speak with Dr. Puder. Go Children's Boston and you will find his email there. He is your best source of information and he will respond to you. If you cannot find his email, please email me and I will put in touch with him. My email is ccates2000@yahoo.com I hope Emily is doing well. Also, google short gut wiki and there is a list of families there who would love to talk to you. good luck

Can Omegaven save our daughter's live from liver failure

Our daughter Emily is 8 months old, fighting SBS and liver failure. We like to find Omegaven in California to save our daughter's life. Can anyone help and give us advise??!! If we have to relocate to Boston, we will. We just want our daughter to have a chance at life. Doctors say that Emily has no chance but we do not beleive that. Emily has made it this far and is very strong.

Please help!

Completely Misinformed in OH

Dan- It is obvious to me that you have not done your homework nor have you ever spoken to Mark Puder. Boston is neither trying to keep Omegaven a secret or have it only in Boston. Dr. Puder is working night and day to get Omegaven to every baby who needs it and get it WHERE EVER they need. It is the hospitals who are preventing children, like my son, from getting Omegaven and forcing people to go to Boston. We are from Texas and I know first hand that Texas Children's in Houston is using Omegaven and Cook Children's in Fort Worth is in the process of getting it. If your doctors told you Boston wouldn't help you get Omegaven, you should get new doctors. I also know first hand from Dr. Puder that he is working with the FDA and the drug maker to get the approval needed for every child in every state to have access to Omegaven. I also wanted to clear up your comment about the "propriety" tpn. Omegaven is not TPN, it replaces the lipids. And as far as Omegaven being propriety to Boston, Omegaven has been used in Europe for many years and is not a product of Boston. It is Dr. Puder who discoverd Omegaven's effect on TPN dependent children. If you have questions about how to get Omegaven you should contact Dr. Puder yourself. He will answer your email. Also visit the site that Kat gave you, there is a list of hospitals who are currently using Omegaven OUTSIDE of Boston. And after reviewing the list, I know of several hospital who aren't even on there. If your child needs Omegaven, there are ways to get it. NO ONE in Boston and least of all Dr. Puder are trying to stop anyone from getting this life/liver saving drug.

Happy Liver in Indiana-Thanks Omegaven

Dan, not sure about your comment and why you made it. Please go to http://grey.colorado.edu/shortgut/index.php/Omegaven and read about children OUTSIDE of Boston on Omegaven.

Boston Children's will not let this out of its hospital

did you all know that boston children's will not let other children's hospital use this 'propriety' tpn. there are lots of kids who need this.

I knew there HAD to be something else...

At my 38 week sonogram, they found a problem with my unborn infant. I was told the baby had an intestinal blockage and would have to be born that day. I was sent to the hospital in Richmond, VA to be induced. Teagan had surgery 10 hours after being born and had a fantastic surgical team! They removed the blockage and reconnected the intestines. She was placed on TPN. After several weeks in the NICU, the GI doctor told us that the TPN was destroying her liver and she would need a Kasai procedure to prolong life to hopefully 5 and then a liver transplant and that she would probably not live to be 25. Luckily the wonderful nurse, Ann, caught me before I passed out and hit the floor. I KNEW there had to be something else. I fought and fought. But was told this was the only way she could get her nutrition. If only I had known! I would have also flown to Boston to meet Dr. Puder! Luckily our story has a happy ending! Teagan was finally able to come off TPN and the damage to the liver was not permanant! She is now a very FIESTY 22 month old, eating and living normally! Thanks to a great GI team and pediatrician, who gave endless hours of devotion to our child. I have since showed this article to the GI team and hope more doctors become aware of the options out there to save our children! Cheers to Dr. Puder for discovering this life saving combination! I wish all parents who need this for their children have the ability to learn about your work! Thanks for all you do for our children!