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Urgent !!!!inborn mitochondrial related disorder Page 2 of 2
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info is getting vaguer--mybe no time to write in deatil..that is ok--i understand worry of child....i am starnger to you--know child less--and i havetime check info--so be detailed and very exacting in details...from color of skin to stools passed -crying with eyes open...positoning of body...help me help you...if no need i again say i understand...
♡ John Stanton last decade
p.s
not telling what to do..but anti seizure is complicating case...symptoms are being modified--if not even to point of detremental to child's mental state when she comes around...we are in compromising situation...at the mercy of the'system'--and what to do?
not telling what to do..but anti seizure is complicating case...symptoms are being modified--if not even to point of detremental to child's mental state when she comes around...we are in compromising situation...at the mercy of the'system'--and what to do?
♡ John Stanton last decade
I will check all this in more detail. Thank you for all your wonderful help.
I will write real soon.
I will write real soon.
godbless last decade
I am wondering if the child is still living. As someone who has Mitochondrial disease I would highly recommend disregarding all of the advice given in this particular forum. If this parent followed the advice given, I fully expect the child died. Mitochondrial Disease is a very deadly and rare disorder that most family doctors know little or nothing about. The best treatment for the child was to follow what was being done at the hospital.
happycebu last decade
Thank you for writing to this post. How did you find us?
My child is alive and well thank you. However, she was never diagnosed with Mitochrondial disrease even though that is what was the believe at the time. I think when the tests were done they were very specific. later on some were repeated. she did show positive for something. long chain and short chain fatty acids I think, not sure. But I think the repeat showed nothing. Her mitochondrail doctor told us she is clear from any Mitochondrial related diseases. Her development is surely delayed since the brain injury occurred 7 years ago. she is 8 years old now. She is non verbal. She is little movement. She is cognitively very alert. She communicates via switches and eye gazing. plus body moevements. All still fairly basic. However her understanding and compregension is far greater than the lack of Muscle co-ordination. She rides an adapted bike. She trys to reply back to my questions but only sounds. she has a visual impairment called Cortical Visual impairment. She has a displaced hip and muscle tone issues which are preventing her from walking. since she has the underatanding of moving one foot after another. If anyone as well as Mr Stanton has any insight please let me know.
My child is alive and well thank you. However, she was never diagnosed with Mitochrondial disrease even though that is what was the believe at the time. I think when the tests were done they were very specific. later on some were repeated. she did show positive for something. long chain and short chain fatty acids I think, not sure. But I think the repeat showed nothing. Her mitochondrail doctor told us she is clear from any Mitochondrial related diseases. Her development is surely delayed since the brain injury occurred 7 years ago. she is 8 years old now. She is non verbal. She is little movement. She is cognitively very alert. She communicates via switches and eye gazing. plus body moevements. All still fairly basic. However her understanding and compregension is far greater than the lack of Muscle co-ordination. She rides an adapted bike. She trys to reply back to my questions but only sounds. she has a visual impairment called Cortical Visual impairment. She has a displaced hip and muscle tone issues which are preventing her from walking. since she has the underatanding of moving one foot after another. If anyone as well as Mr Stanton has any insight please let me know.
godbless last decade
happycebu last decade
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