Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Hi . I really can't give you much information regarding your daughter, as my daughter is dx with unspecified mito/metabolic disease. What I CAN tell you is that the disease manifests itself in many different ways, even in children who have the exact same diagnosis. Some children who were given a poor prognosis by a doc have done considerably well and defied the odds, while others who had a something that was supposedly "mild" deteriorated unexplainably. The consensus seems to be that no-one knows exactly how the disease will affect the individual. There is a wealth of support and information here on this list, and I know that I would feel so terribly alone without reading these posts everyday. Someone will have some information for you- sometimes you have to repost with your particular question in the subject line in order to get a response. This list is so busy that many people don't read messages that don't seem to pertain to them. I will pray for you to find the information you are seeking, and for Kierra's health and well being. Take care. Holly Rubio Can anyone help me? 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. intolerencePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Holly said it perfectly. The doctors know so little that their predictions and prognosis mean nothing to me. According to the doctors, both my girls lived their prognosis. One died at age 8 and my other one is almost 8 and both should have died in infancy and both were pretty good for most of their life. In fact, the one that died went undiagnosed until she died and so never got treatment or cocktail and we never had any idea what to avoid (like heat, stress, lack of food, exhaustion, lack of sleep etc) and yet she did well. I just always had an instinct about these things with her and took it easy because I knew she cold not handle certain things. Bottom line, mito is such a confusing unpredictable disease, it is disgusting.Having said that, I wish you the best. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: Holly Rubio Sent: Wednesday, December 29, 2004 8:30 AM To: Mito Subject: Re: Can anyone help me?/ Hi . I really can't give you much information regarding your daughter, as my daughter is dx with unspecified mito/metabolic disease. What I CAN tell you is that the disease manifests itself in many different ways, even in children who have the exact same diagnosis. Some children who were given a poor prognosis by a doc have done considerably well and defied the odds, while others who had a something that was supposedly " mild " deteriorated unexplainably. The consensus seems to be that no-one knows exactly how the disease will affect the individual. There is a wealth of support and information here on this list, and I know that I would feel so terribly alone without reading these posts everyday. Someone will have some information for you- sometimes you have to repost with your particular question in the subject line in order to get a response. This list is so busy that many people don't read messages that don't seem to pertain to them. I will pray for you to find the information you are seeking, and for Kierra's health and well being. Take care. Holly Rubio Can anyone help me? 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 Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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