Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 > > Good question. The other single point I would add (since Dr. Cohen > mentioned this also through Jeannine's post) is that Steph's doctors don't > monitor her LA at all. They feel it is a verified problem, but the exact > numbers at any given time are irrelevant - as in, it's broken, and > regardless what the numbers are it probably still isn't normal. It's not > something that we even worry or care about other than as something that is > specific to whatever is wrong with her - I think this has to be individual though or subject to other opinions. In my kid's cases we do worry about it and follow it and treat it. Maybe what is different is that there are times when the LA is normal and then they become acidotic . When acidotic they are not as they are when not - in other words they have added symptoms and signs to tell us and the blood levels bear this out. I'm not saying that Steph's doctors or Dr. Cohen are wrong at all. just saying that in some situations getting the LA down does make a difference and is important. I would say that if you can not tell a difference in your self or child on a day when the LA is high and a day when it is normal then it may not be worth treating. But for us it is a definite difference and as zach and Sam have clearly had set backs and progression our doctors feel that we must follow it and treat it. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 > > Good question. The other single point I would add (since Dr. Cohen > mentioned this also through Jeannine's post) is that Steph's doctors don't > monitor her LA at all. They feel it is a verified problem, but the exact > numbers at any given time are irrelevant - as in, it's broken, and > regardless what the numbers are it probably still isn't normal. It's not > something that we even worry or care about other than as something that is > specific to whatever is wrong with her - I think this has to be individual though or subject to other opinions. In my kid's cases we do worry about it and follow it and treat it. Maybe what is different is that there are times when the LA is normal and then they become acidotic . When acidotic they are not as they are when not - in other words they have added symptoms and signs to tell us and the blood levels bear this out. I'm not saying that Steph's doctors or Dr. Cohen are wrong at all. just saying that in some situations getting the LA down does make a difference and is important. I would say that if you can not tell a difference in your self or child on a day when the LA is high and a day when it is normal then it may not be worth treating. But for us it is a definite difference and as zach and Sam have clearly had set backs and progression our doctors feel that we must follow it and treat it. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 > > Good question. The other single point I would add (since Dr. Cohen > mentioned this also through Jeannine's post) is that Steph's doctors don't > monitor her LA at all. They feel it is a verified problem, but the exact > numbers at any given time are irrelevant - as in, it's broken, and > regardless what the numbers are it probably still isn't normal. It's not > something that we even worry or care about other than as something that is > specific to whatever is wrong with her - I think this has to be individual though or subject to other opinions. In my kid's cases we do worry about it and follow it and treat it. Maybe what is different is that there are times when the LA is normal and then they become acidotic . When acidotic they are not as they are when not - in other words they have added symptoms and signs to tell us and the blood levels bear this out. I'm not saying that Steph's doctors or Dr. Cohen are wrong at all. just saying that in some situations getting the LA down does make a difference and is important. I would say that if you can not tell a difference in your self or child on a day when the LA is high and a day when it is normal then it may not be worth treating. But for us it is a definite difference and as zach and Sam have clearly had set backs and progression our doctors feel that we must follow it and treat it. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Chrissy what exactly is ambratose and empact? My daughter has mito and her lactic acid is always high. Becky Re: Mannatech >From: ChrissyGE@... > >, >While I am typing this email I am sitting in the Mc House in >Cleveland. We just got confirmation from Dr Cohen last night that does >in deed have a Mito Disease based on the preliminary report from his muscle >biopsy. has been taking Mannatech Products from about a month and I >asked Dr Cohen what he thought about them. He said " I have heard of them >and yes I suggest continue them especially the Ambratose and Empact >which have been shown to LOWER LACTIC acid levels in clinical trials. " >Needless to say that if the Wizard himself endorses them then I will beg >borrow and steal to get them. > > and -----------confirmed Mito and Possible Pearsons Syndrome >(any one heard of this syndrome--------Dr Cohen had the Oncologist do a bone >marrow biopsy to determine if he has this ) > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Chrissy what exactly is ambratose and empact? My daughter has mito and her lactic acid is always high. Becky Re: Mannatech >From: ChrissyGE@... > >, >While I am typing this email I am sitting in the Mc House in >Cleveland. We just got confirmation from Dr Cohen last night that does >in deed have a Mito Disease based on the preliminary report from his muscle >biopsy. has been taking Mannatech Products from about a month and I >asked Dr Cohen what he thought about them. He said " I have heard of them >and yes I suggest continue them especially the Ambratose and Empact >which have been shown to LOWER LACTIC acid levels in clinical trials. " >Needless to say that if the Wizard himself endorses them then I will beg >borrow and steal to get them. > > and -----------confirmed Mito and Possible Pearsons Syndrome >(any one heard of this syndrome--------Dr Cohen had the Oncologist do a bone >marrow biopsy to determine if he has this ) > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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