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I am a single mother of two boys. My oldest son is 7. His name is Jalen and he was born with short gut syndrome. He has a cental line and has been TPN depentent since birth. He recives feeds through a G-tube. Jalen is also 1 of the few that has had the STEP precidure. I am open to anyone that can relate to us and may need tips for them selfs. I am so excited to know i have found a group full of people that can relate to us!
Welcome! What is the STEP procedure? Is that where they lengthen the gut?
My son is TPN dependent due to a mitochondrial disorder. He's eleven, and doing well. What measures do you take to protect your son's liver being that he's on TPN for so many years?
STEP is a Serial Transverse Enteroplasty Procedure. Yeap, it is a gut lengthing surgery. Jalen did have a few liver problems early on, around 3mon. of age. His G.I. Dr. put him on Ursodiol, within just a few months his symptoms (abnormal liver function, yellowing of the skin & eyes, and an enlarged liver) went away. The Dr. did leave Jalen on the med for awhile, even without all the symptoms. He has now been off for quite a few years and has no signs of any problems. Does your son eat by mouth or get any tube feeds? Jalen does both and I know they say that helps with the liver function. Im not realy familar with your sons codition, I have heard of it. How long has he been on TPN? Will he be able to get off one day? If you have any other questions please feel free to contact me. I hope your son continues to do well!
Hi, while my daughter had neither of your childrens problems she did have a g-tube and then a broviac and TPN-no food by mouth for almost 4 years when they realized that the food via g-tube was not working. She was sent to UCLA and diagnosis with Pseudo Obstrution Of the Intestional Tract which at that time made her one of about 500 in US. She had many other medical problems and had 30 surgeries, a trach, O2 etc. in a wheelchair and so on. So what is the point---she is now 25, married well and has a 2yr old son who is well! The genetic specialist told her not to have children but she felt strongly that she would like to have one child which she did (no more kids) and life is really wonderful for her. She was on her way for a lung transplant when things turned around for her. The doctors called it a miracle at Childrens Hosp. in Orange Co. I just know my daughter is well and all the hard times were worth it! Now I am on TPN--go figure! Oh, by the way...she was adopted by me so it is not a genetic situation between the two of us! So my heart goes out to you and your children, not an easy job but so worth it. Isn't this Oley site a blessing!
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