Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Hello Group, I have not posted in some time but always read all messages. The reason I am writing now though is for a friend in desperate need of help. My sister got an email from a co-worker/friend and this is what she writes: The reason I'm e-mailing you is to ask you a couple questions. My sister's friend Cindy just had a baby boy on Wednesday. On Friday - they had to life flight him to Philadelphia Children's Hospital. Some of the things they're telling her kinda sounds like Miranda's condition. I just wanted to see if it was at all the same & if you knew much about it - They said the condition is Urea System Disorder. It's a metabolic disorder - the type of condition he has it OTC deficiency. There are certain proteins that he can't digest, so they're working on giving him medicine & certain food to help. & it has something to do with his amonia levels. That's about all I know. On Saturday, they told her he wasn't going to make it. So, my mom, my sister & I drove to Philly & they baptized him. I honestly think I can say, it was the saddest thing I've ever seen. I missed you today - you're the only one at work that would have cried with me! - But today, they are making it seem a little more hopeful. I don't know if it's at all like what Miranda has, I just thought I remembered hers was a metabolic condition, too? Do any of you know anything of this, have any advice or something to offer this poor family??? PLEASE HELP Thanks so much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Kinda sounds like a FOD, since they already know what it is. FOD's are commonly secondary to mito. I'm not to familiar with them so I really have no advice. I do know, however, that many are very treatable with diet. Best wishes to your friends family. I will pray the baby does well. Find files on your PC instantly with the new MSN Toolbar Suite beta – FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 I agree that this sounds like a fatty oxidation disorder. You can look it up on the web by putting in fatty oxidation disorder and clicking on the FOD support group. Lot's of helpful information on the site. Lucas was just discovered the end of last year to have a FOD as well to his suspected mito disorder. Loriann --- Steve and wrote: > Hello Group, > I have not posted in some time but always read > all messages. The reason > I am writing now though is for a friend in desperate > need of help. My sister > got an email from a co-worker/friend and this is > what she writes: > > > The reason I'm e-mailing you is to ask you a couple > questions. My sister's > friend Cindy just had a baby boy on Wednesday. On > Friday - they had to life > flight him to Philadelphia Children's Hospital. > Some of the things they're > telling her kinda sounds like Miranda's condition. > I just wanted to see if > it was at all the same & if you knew much about it - > > > They said the condition is Urea System Disorder. > It's a metabolic disorder > - the type of condition he has it OTC deficiency. > There are certain > proteins that he can't digest, so they're working on > giving him medicine & > certain food to help. & it has something to do with > his amonia levels. > That's about all I know. On Saturday, they told her > he wasn't going to make > it. So, my mom, my sister & I drove to Philly & > they baptized him. I > honestly think I can say, it was the saddest thing > I've ever seen. I missed > you today - you're the only one at work that would > have cried with me! - But > today, they are making it seem a little more > hopeful. I don't know if it's > at all like what Miranda has, I just thought I > remembered hers was a > metabolic condition, too? > > Do any of you know anything of this, have any advice > or something to offer > this poor family??? PLEASE HELP > Thanks so much, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 , all i can offer is that CHOP is a wonderful hospital with MDA clinic. Your friends baby boy is in very good hands there! I will keep them in our family prayers!! Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 http://mp.medscape.com/cgi-bin1/DM/y/hmOm0EMxdi0F580GSIW0EW maybe of help.. > Hello Group, > I have not posted in some time but always read all messages. The reason > I am writing now though is for a friend in desperate need of help. My sister > got an email from a co-worker/friend and this is what she writes: > > > The reason I'm e-mailing you is to ask you a couple questions. My sister's > friend Cindy just had a baby boy on Wednesday. On Friday - they had to life > flight him to Philadelphia Children's Hospital. Some of the things they're > telling her kinda sounds like Miranda's condition. I just wanted to see if > it was at all the same & if you knew much about it - > > They said the condition is Urea System Disorder. It's a metabolic disorder > - the type of condition he has it OTC deficiency. There are certain > proteins that he can't digest, so they're working on giving him medicine & > certain food to help. & it has something to do with his amonia levels. > That's about all I know. On Saturday, they told her he wasn't going to make > it. So, my mom, my sister & I drove to Philly & they baptized him. I > honestly think I can say, it was the saddest thing I've ever seen. I missed > you today - you're the only one at work that would have cried with me! - But > today, they are making it seem a little more hopeful. I don't know if it's > at all like what Miranda has, I just thought I remembered hers was a > metabolic condition, too? > > Do any of you know anything of this, have any advice or something to offer > this poor family??? PLEASE HELP > Thanks so much, > > Quote Link to comment Share on other sites More sharing options...
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