Mitochondrial Respiratory Chain and Fatty Oxidation Disorder

[Guest guest]

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 understand 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)

[Guest guest]

I can't help you with the diet end, but I wanted to let you know there are several of us that have kids with apnea and on monitors. Asenath, my 4 year old (tomorrow), uses monitors due to disautonomia (the brain stems inability to regulate temperature, heart rate, breathing patterns, blood pressure...) Also, my youngest daughter, Zipporrah (4 months) has the problem with her EMS's as well and I was wondering how much you know about that issue. She too has strong smelling urine at times. Just this morning I noticed the smell-not a fishy odor that Carnitor produces, but a strong/weird smell. I have noticed this odor with Asenath when she starts to get a virus. Does EMA issues cause the smell? Sorry I can't help you more on the other issues, but welcome to the group. I am sure some of the others can help you. Darla: mommy to Asenath, Zipporrah, and the gang 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 understand 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. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com