Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 hey saw no one else was answering so I will throw my two cents in... yes it does sound like joe is dealing with dysautonomia. The autonomic system controls all the things our body is supposed to do automatically...like regulate heart rate, blood pressure and breathing...temperature, swallowing and blinking...and so on. My had a lto of these issues and finally got a gtube because he could not swallow liquids but did food pretty well...eventually we feared he was beginning to have issues with food but by then his brain was so involved (and nothing can be done about the brain) that we decideed him eating what he wanted and being happy was more important than anything else...he died just a few months later and he never did get a pneumonia. Dysautonomia is a hard issue b/c there isnt' a whole lot that can be done about it...no breakthrough meds or anything. I would be happy to help answer more specific questions if you have them...not sure exactly what would be most helpful for you. Do you have a mito doc on board yet? Who is it? This will go a LONG way in you getting better information and help! deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 hey saw no one else was answering so I will throw my two cents in... yes it does sound like joe is dealing with dysautonomia. The autonomic system controls all the things our body is supposed to do automatically...like regulate heart rate, blood pressure and breathing...temperature, swallowing and blinking...and so on. My had a lto of these issues and finally got a gtube because he could not swallow liquids but did food pretty well...eventually we feared he was beginning to have issues with food but by then his brain was so involved (and nothing can be done about the brain) that we decideed him eating what he wanted and being happy was more important than anything else...he died just a few months later and he never did get a pneumonia. Dysautonomia is a hard issue b/c there isnt' a whole lot that can be done about it...no breakthrough meds or anything. I would be happy to help answer more specific questions if you have them...not sure exactly what would be most helpful for you. Do you have a mito doc on board yet? Who is it? This will go a LONG way in you getting better information and help! deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 I had ask a question on Sugar levels and got some wonderful responses. This morning someone suggested Dysautonomia. I read alittle about it this morning and would like to know some more about it. This is what has been going on with this week. Choking on liquids, feeling shaky, extra fatiged and a new akward gait. While reading about Dysautonomia, does have the excesive sweats, poor heat intolerence, runs fevers for no reason, severe G.I. problems, Heart Arrythmia(heart races, yet heart itself looks fine) Does anyone else feel this may be our problem? What else would we look for? I would like to get you opinion! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Dysautonomia is quite common in people with metabolic/mitochondrial disease. My DS has alternating constipation/diarrhea, dialated pupils, fatigue, tachycardia, poor temperature control, stomach aches, headaches, mottled skin, panic, etc. Dynakids is a good site. http://www.dynakids.org/index.jsp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Dysautonomia is quite common in people with metabolic/mitochondrial disease. My DS has alternating constipation/diarrhea, dialated pupils, fatigue, tachycardia, poor temperature control, stomach aches, headaches, mottled skin, panic, etc. Dynakids is a good site. http://www.dynakids.org/index.jsp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Dysautonomia is quite common in people with metabolic/mitochondrial disease. My DS has alternating constipation/diarrhea, dialated pupils, fatigue, tachycardia, poor temperature control, stomach aches, headaches, mottled skin, panic, etc. Dynakids is a good site. http://www.dynakids.org/index.jsp Quote Link to comment Share on other sites More sharing options...
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