Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 I posted this question a while ago, but had no replys, so I thought I would give it a try again. We are looking at putting in a portacath for Ronan (4yrs old). I have heard that mito kids have more infection problems with them then other kids. What have been your experiences. Ronan is suseptable to Resp. infections, but never gets a septicemia. Please let me know your experiences with portacaths--- good and bad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 have heard that mito kids have more infection problems with them then other kids Hi , Mamie Rose had a portacath, which helped her a lot. She only had it for 4 months, which is nothing compared to lots of other kids, so I hope you get other opinions, too! We had no problems with infections. We were absolutely meticulous about our technique when caring for her line. That is super important, as you no doubt know. Good luck! Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hi , I have begged that Dr. Boles put in a portacath in our son because when he is in an episode of dysautonomia they literally cannot get a vein and he has been through no joke 19 sticks before they got the IV in. I think that borders child abuse personally, but because it is in the name of medical help it doesn't count. Dr. Boles stands firm that he will not put one in, because his experience with Mito children has been that the infection rate is way too high, and that Mito bodies fight anything that is foreign to the body even more than the normal body. If you can get a hold of Lappan on this list, I know she has some real live first hand experience with both the positive and negative sides to this. Good luck big hugs to you, O When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hi , I have begged that Dr. Boles put in a portacath in our son because when he is in an episode of dysautonomia they literally cannot get a vein and he has been through no joke 19 sticks before they got the IV in. I think that borders child abuse personally, but because it is in the name of medical help it doesn't count. Dr. Boles stands firm that he will not put one in, because his experience with Mito children has been that the infection rate is way too high, and that Mito bodies fight anything that is foreign to the body even more than the normal body. If you can get a hold of Lappan on this list, I know she has some real live first hand experience with both the positive and negative sides to this. Good luck big hugs to you, O When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hi , I have begged that Dr. Boles put in a portacath in our son because when he is in an episode of dysautonomia they literally cannot get a vein and he has been through no joke 19 sticks before they got the IV in. I think that borders child abuse personally, but because it is in the name of medical help it doesn't count. Dr. Boles stands firm that he will not put one in, because his experience with Mito children has been that the infection rate is way too high, and that Mito bodies fight anything that is foreign to the body even more than the normal body. If you can get a hold of Lappan on this list, I know she has some real live first hand experience with both the positive and negative sides to this. Good luck big hugs to you, O When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors! Quote Link to comment Share on other sites More sharing options...
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