Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 I am trying to remember everything. What I remember Stanhope writing me is that genital-urological problems are clearly a characteristic of RSS (e.g., undescended testicles, hypospadius, inguinal hernias). And when one " end " of the urinary tract is affected, the other end may have a higher risk of being affected. But I think he was referring to kidneys and getting ultrasounds of the kidneys, not the liver. Yes, I just went back and checked what I wrote for the Guidebook so far, and that is what I have written. I don't know anything about liver problems. I am so sorry! Will you keep us posted on Jillie, and also let me know if Dr. H says anything about it in relation to RSS? Jenn > > Hi Guys, > > Has any of your wonderful RSS kids had any liver issues? I have read > most of the articles out there on RSS (courtesy of Magic) and have > not noted liver involvement within the syndrome. > > Last April, Dr Harbison ordered blood tests which showed Jillie had > abnormal liver function tests. She had a multitude of non invasive > tests and had her prilosec switched to zantac (ocassional side > effect of prilosec is liver inflammation which goes away when > discontinued). Her LFT's remained the same. Last month she had a > liver biopsy and today her GI doc called to tell me the results are > clearly abnormal but very confusing. He is meeting with a > pathologist and a liver expert on Monday to discuss her biopsy. > > Of course being a NICU nurse, I'm fast forwarding to a possible > liver transplant! I thought I was stressed with sending her to > school in 2 months (even though she will be going with a nurse) but > this is freaking me out. Has anyone out there had a similar > experience?? > > (Mom to Ethan age 6 and Jillie age 2.75+, RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 hi victoria!! i am sorry that i have no answeres for you but want to let you know that you giys will be in my thoughts and pryaers that jillie will be alright and you guys will get through this!! hang in there!! jodie c Quote Link to comment Share on other sites More sharing options...
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