Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 I have posted here before. My daughter is Kierra, she is 9 years old. We got her biospies back last week. She has Scadd and Mito. They did not tell me a complex, just that it was in the respitory chain. They want to ween her off of tpn due to something that showed up in her CT scan. I have no idea what all this means. The genetic doctor tried to explain this to me, but I am lost. They made it sound like Kierra could die from this. Because one breaks down her energy and she can't absorb or break down fats and sugars. She has had 2 crisises that landed her in the hospital. I didn't even know that she was in crisis. I would love any help you could offer. I tried to research but I could not understand. They told me to join fod support group, but I have not really found out much there either. I thank you for your help. Kierra 9 years old Tpn through mediport, gp,dysmotility disorder,gerd,scadd, mito, chronic constipation, clotting problems, low body temp, temp. intolerence Quote Link to comment Share on other sites More sharing options...
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