Re: Tina- Mitochondrial Respiratory Chain and Fatty Oxidation Disorder

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My two affected daughters aren't potty trained. Asenath, four, has issues due to her many strokes that make her unable to potty train fully at this time. Testing shows she is cognitively, speech, and physically at about 2 1/2 years of age rather than 4 years. Zipporrah, 4 months, is of course not trained either, and she is the one we have seen the EMA issue in. But both have had the same smell about them of and on. I remember their pediatrician suggesting it was virus related but it happens when they don't have signs of any viruses often so I am unsure what it has to do with. I am unsure about the monitors. We will keep them until I am sure they are unneeded. The steroids are making a huge difference in her heart rate fluxuations, irregular breath patterns, and apnea, but she still has them. Before steroids it was pretty bad. Her heart rate would be below 60 then shoot up to 150's and up and down. Her breathing has been described like a pre-term baby's breathing. Her temperature is often 94 degrees rather than the 98 degree area. Disautonomia affects many areas and can be scary at times. There are several mothers on this list that can tell you the ups and downs of the condition and what all it can affect. Darla: mommy to Asenath, Zipporrah, Luke, Leah, , Issac, Tirzah, Kezia, and Marquis Mitochondrial Respiratory Chain and Fatty Oxidation Disorder Hi, my name is Tina and I am new to the group. I have a 3year old son who until recently was diagnosed with a Fatty Oxidation Disorder (SCAD to be specific) and have recently been told that he has a respiratory chain disorder with the fatty oxidation being secondary. I was wondering ! if anyone's child has a dual diagnosis of FOD and Mito. I unders tand the diets are the total opposite. I have been feeding him and high carb, low fat diet and now I am told that the high carb could actually hurt him. They are running two more test on his skin to see if they can get a clear diagnosis and until then they want me to normalize his fat intake to about 35% and lower his carbs They tell me the Mito needs to be high fat, low carb. I don't feel comfortable giving him a fat intake of 35% when he is now at around 20-25%. When we had increased to about 30% at one time I did see a change. His urine has a funny smell, the fatty acid (EMA) is increased. For his symptoms now he has muscle weakness, brain calcifications, delayed myelin and loss of myelin, apnea (which is my biggest concern, he is still hooked up to an apnea/heart monitor at 3years old)(Anyone else's child have apnea?) Any suggestions as far as the diet with Mito kids would be helpful also what is the protocol for when they! become sick, won't eat, etc. I always had an emergency letter and glucose IV needed to be started is it the same for the respiratory chain disorders? Thanks for listening Tina Mom to 3yrs (Mito/SCAD)Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com