Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 > Heidi Payton, Did they indicate anything else? How did they find this? I know some children with mito can have malabsportion issues and sensitivities to certain foods causing more malabsorption. There are other conditions known with protein issues, but it is better if you just wait and see what the doc says on Monday. You don't want to spend the weekend getting upset and researching things that may not even be the case (I know from experience). I always over worry and over think. Over bearing they call me. Any other info they gave you at all? I know it is hard to wait, but if it was that serious, they would've had you come to the hospital to be admitted. What symtpoms brought you here? What mito disorder is it? Please let us know on Monday what the doc had to say. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 They told us that a biopsy of her GI tract might be the next place we have to look to find more information. I have been complaining over a year that she has had cronic loose stools and know one listed to me but finally the Mayo Clinic. They wanted to run these test there but we couldn't stay any longer. They said it was her diet that was causing it, along with all the medications. We were on a high sugar diet, then the switched her to high protein, she turned as white as a sheet and was sweeting with a body temperature of 95. We switched her to pedisure and so far so good, she has had alot more energy and actually this week she sat up for the very first time and did it herself. We are very proud! I will let you all know Monday what happens, I just pray for the best! Heidi Payton Wayne, 4 Adeline Maekenna, 2 mitochondrial myopathy non-specific Logan , 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 They told us that a biopsy of her GI tract might be the next place we have to look to find more information. I have been complaining over a year that she has had cronic loose stools and know one listed to me but finally the Mayo Clinic. They wanted to run these test there but we couldn't stay any longer. They said it was her diet that was causing it, along with all the medications. We were on a high sugar diet, then the switched her to high protein, she turned as white as a sheet and was sweeting with a body temperature of 95. We switched her to pedisure and so far so good, she has had alot more energy and actually this week she sat up for the very first time and did it herself. We are very proud! I will let you all know Monday what happens, I just pray for the best! Heidi Payton Wayne, 4 Adeline Maekenna, 2 mitochondrial myopathy non-specific Logan , 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 They told us that a biopsy of her GI tract might be the next place we have to look to find more information. I have been complaining over a year that she has had cronic loose stools and know one listed to me but finally the Mayo Clinic. They wanted to run these test there but we couldn't stay any longer. They said it was her diet that was causing it, along with all the medications. We were on a high sugar diet, then the switched her to high protein, she turned as white as a sheet and was sweeting with a body temperature of 95. We switched her to pedisure and so far so good, she has had alot more energy and actually this week she sat up for the very first time and did it herself. We are very proud! I will let you all know Monday what happens, I just pray for the best! Heidi Payton Wayne, 4 Adeline Maekenna, 2 mitochondrial myopathy non-specific Logan , 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Grace has had a lot of problems with loose stools, actually her first sign of a problem. It was a problem for a very long time. It was eventually concluded that she cannot break down the long chain fatty acids, so her body just rejected them. Now she is fully on her mito cocktail and we supplement when it is bad with Pediasure with fiber in it. (Fiber can work both ways) Her biggest help was the Carnitor, once she was on a big enough dose we have only had a couple of episodes of it. Also Grace did have all the biopsies, endoscopy, colonoscopy, none of these showed any problem. (Granted these were all done before mito was a concern) Has she been tested for FOD's? Many of these can go along with mito. Grace does not have an actual name for her's, but we have genetic testing out to confirm/deny LCHAD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Grace has had a lot of problems with loose stools, actually her first sign of a problem. It was a problem for a very long time. It was eventually concluded that she cannot break down the long chain fatty acids, so her body just rejected them. Now she is fully on her mito cocktail and we supplement when it is bad with Pediasure with fiber in it. (Fiber can work both ways) Her biggest help was the Carnitor, once she was on a big enough dose we have only had a couple of episodes of it. Also Grace did have all the biopsies, endoscopy, colonoscopy, none of these showed any problem. (Granted these were all done before mito was a concern) Has she been tested for FOD's? Many of these can go along with mito. Grace does not have an actual name for her's, but we have genetic testing out to confirm/deny LCHAD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Grace has had a lot of problems with loose stools, actually her first sign of a problem. It was a problem for a very long time. It was eventually concluded that she cannot break down the long chain fatty acids, so her body just rejected them. Now she is fully on her mito cocktail and we supplement when it is bad with Pediasure with fiber in it. (Fiber can work both ways) Her biggest help was the Carnitor, once she was on a big enough dose we have only had a couple of episodes of it. Also Grace did have all the biopsies, endoscopy, colonoscopy, none of these showed any problem. (Granted these were all done before mito was a concern) Has she been tested for FOD's? Many of these can go along with mito. Grace does not have an actual name for her's, but we have genetic testing out to confirm/deny LCHAD. Quote Link to comment Share on other sites More sharing options...
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