Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Amy, I am certain that our kids are very different here.. but my son has autism and suspected mito disorder and one of the main reasons for suspicion is his history of high lactate acid levels.. I was told that 2.2 was normal and he has been as high as 11.3. He does not get tested much... but last summer when he regressed in eating and ability to pass feces and has been on mito cocktail his levels were like 3.4 and I was told that that is good for him.. at least they did not think we could ever find the normal zone. But the reason I wanted to write is that I was told that some labs have different ways or there is another different way that the result levels are read. And have also been told to make sure the test is done a certain way for years.. such as no tourniquet and put on ice immediately and I have seen more screw ups than what doctor feels like is right. The interesting thing was last summer in ER .. the blood person tried the test both ways and sa id the levels came out close to the same either way. At least he appeased what I was always told to advocate for with that test. I have not come across info saying over 5 one could die.. do you know where you found that article? This broad category seems to affect each individual differently. Keep searching and asking and best of luck.. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Amy, Welcome to the group. My daughter Emilie, 16, also had elevated lactic acid and alanine when she first saw Dr. Cohen a year ago. Don't know if it's a coincidence, but we later found out she, too, has complex IV. All Dr. Cohen said to us about the alanine was that it was suggestive of mito, along with some other labs she had (elevated lactic acid and low-normal CoQ10). Based on those labs and her symptoms, he recommended a muscle biopsy. She had the biopsy last summer, and that is how we found out about the complex IV. Sorry I can't tell you more, but I do understand how confusing and frustrating all this is. Like your daughter, Emilie has gradually added symptoms over the last 5 1/2 years (had no idea it was mito for five years). Emilie's symptoms include: fatigue, possible migraines, vomiting, decreased muscle tone, GI problems, flushed face, pallor, color and temperature changes in her hands, feet, and knees, heat intolerance, cold interolerance, irritability, confusion, fasting intolerance, sudden drowsiness, glassy eyes, dilated pupils, and tachycardia. She also has cerebral palsy, but we are not sure if that is from the mito or from being born premature--though we think it's a combination. Hope you can get lots of ideas from this group. Everyone here is very supportive and helpful. -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Amy, Welcome to the group. My daughter Emilie, 16, also had elevated lactic acid and alanine when she first saw Dr. Cohen a year ago. Don't know if it's a coincidence, but we later found out she, too, has complex IV. All Dr. Cohen said to us about the alanine was that it was suggestive of mito, along with some other labs she had (elevated lactic acid and low-normal CoQ10). Based on those labs and her symptoms, he recommended a muscle biopsy. She had the biopsy last summer, and that is how we found out about the complex IV. Sorry I can't tell you more, but I do understand how confusing and frustrating all this is. Like your daughter, Emilie has gradually added symptoms over the last 5 1/2 years (had no idea it was mito for five years). Emilie's symptoms include: fatigue, possible migraines, vomiting, decreased muscle tone, GI problems, flushed face, pallor, color and temperature changes in her hands, feet, and knees, heat intolerance, cold interolerance, irritability, confusion, fasting intolerance, sudden drowsiness, glassy eyes, dilated pupils, and tachycardia. She also has cerebral palsy, but we are not sure if that is from the mito or from being born premature--though we think it's a combination. Hope you can get lots of ideas from this group. Everyone here is very supportive and helpful. -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Amy, Welcome to the group. My daughter Emilie, 16, also had elevated lactic acid and alanine when she first saw Dr. Cohen a year ago. Don't know if it's a coincidence, but we later found out she, too, has complex IV. All Dr. Cohen said to us about the alanine was that it was suggestive of mito, along with some other labs she had (elevated lactic acid and low-normal CoQ10). Based on those labs and her symptoms, he recommended a muscle biopsy. She had the biopsy last summer, and that is how we found out about the complex IV. Sorry I can't tell you more, but I do understand how confusing and frustrating all this is. Like your daughter, Emilie has gradually added symptoms over the last 5 1/2 years (had no idea it was mito for five years). Emilie's symptoms include: fatigue, possible migraines, vomiting, decreased muscle tone, GI problems, flushed face, pallor, color and temperature changes in her hands, feet, and knees, heat intolerance, cold interolerance, irritability, confusion, fasting intolerance, sudden drowsiness, glassy eyes, dilated pupils, and tachycardia. She also has cerebral palsy, but we are not sure if that is from the mito or from being born premature--though we think it's a combination. Hope you can get lots of ideas from this group. Everyone here is very supportive and helpful. -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Amy, I also heard that the test needs to be done without a touriquet and it can't be a difficult stick, both of these can give a falsely high value. also has mildly elevated lactic acid. I have never heard that above 5 could be deadly. We were also told that many of 's labs were normal or weren't an issue, until we spoke with Dr. Kelley, and found that many of her symptoms and lab values were actually significant--it is so overwhelming, I've heard from this list that Dr. Cohen is excellent, obviously most of the medical community does realize the significance of many symptoms/lab values to mito--so as you know its important to talk to someone who knows. All the best to you and your daughter. Randee Bates mom to age 5--?mito/genetic disorder, ph 10 and Kerri 8, wife to Dru -- In Mito , " halilemas <mclay@w...> " <mclay@w...> wrote: > Hi my name is Amy. I have a daughter who is now 7 that was diagnosed > with complex IV deficiency and now lactic acidosis. When we first > started all of this, we were told that from a chest xray that her > heart was a little big. We then were sent to a cardiologist who > diagnosed her with hypertrophic cardiomyopathy. It tooks us almost > five years to find out the cause. Then it took me another year to > find someone who knew anything about it. Finally I joined UMDF and > found a doctor close to home at the cleveland clinic, Dr. Bruce Cohen. > He has been wonderful. We were always told her lactic acid levels > were a little elevated, but were told not to worry. This time we got > a copy of the results from her last visit and her lactic acid levels > went from 2.6 in july 2003 to 4.2 in december 2003. Now I am very > worried because everything I have read says that anything over 5 can > be deadly. I am supposed to worry? Wouldn't the doctor call if he was > worried? Does any one know if this is high? They also did an amino > acid test, which no one has ever done before, and she had 12 amino > acids that were elevated. The highest was something called Alanine. > Does anyone know what that is? I have researched so much over the > last seven years and I still feel like I don't know enough. It is > always something new. More symptoms, different symptoms. I was told > until I saw Dr. Cohen that my daughter Lindsey would never have any > problems from this. Now she has fatigue, migraines, muscle aches, > stomach pain, reflux, hyperventilation, and she gets sick so easy. > Please if anyone could help, it would be greatly appreciated! > > Thank You, > Amy > mother of Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Amy, I also heard that the test needs to be done without a touriquet and it can't be a difficult stick, both of these can give a falsely high value. also has mildly elevated lactic acid. I have never heard that above 5 could be deadly. We were also told that many of 's labs were normal or weren't an issue, until we spoke with Dr. Kelley, and found that many of her symptoms and lab values were actually significant--it is so overwhelming, I've heard from this list that Dr. Cohen is excellent, obviously most of the medical community does realize the significance of many symptoms/lab values to mito--so as you know its important to talk to someone who knows. All the best to you and your daughter. Randee Bates mom to age 5--?mito/genetic disorder, ph 10 and Kerri 8, wife to Dru -- In Mito , " halilemas <mclay@w...> " <mclay@w...> wrote: > Hi my name is Amy. I have a daughter who is now 7 that was diagnosed > with complex IV deficiency and now lactic acidosis. When we first > started all of this, we were told that from a chest xray that her > heart was a little big. We then were sent to a cardiologist who > diagnosed her with hypertrophic cardiomyopathy. It tooks us almost > five years to find out the cause. Then it took me another year to > find someone who knew anything about it. Finally I joined UMDF and > found a doctor close to home at the cleveland clinic, Dr. Bruce Cohen. > He has been wonderful. We were always told her lactic acid levels > were a little elevated, but were told not to worry. This time we got > a copy of the results from her last visit and her lactic acid levels > went from 2.6 in july 2003 to 4.2 in december 2003. Now I am very > worried because everything I have read says that anything over 5 can > be deadly. I am supposed to worry? Wouldn't the doctor call if he was > worried? Does any one know if this is high? They also did an amino > acid test, which no one has ever done before, and she had 12 amino > acids that were elevated. The highest was something called Alanine. > Does anyone know what that is? I have researched so much over the > last seven years and I still feel like I don't know enough. It is > always something new. More symptoms, different symptoms. I was told > until I saw Dr. Cohen that my daughter Lindsey would never have any > problems from this. Now she has fatigue, migraines, muscle aches, > stomach pain, reflux, hyperventilation, and she gets sick so easy. > Please if anyone could help, it would be greatly appreciated! > > Thank You, > Amy > mother of Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Amy, I also heard that the test needs to be done without a touriquet and it can't be a difficult stick, both of these can give a falsely high value. also has mildly elevated lactic acid. I have never heard that above 5 could be deadly. We were also told that many of 's labs were normal or weren't an issue, until we spoke with Dr. Kelley, and found that many of her symptoms and lab values were actually significant--it is so overwhelming, I've heard from this list that Dr. Cohen is excellent, obviously most of the medical community does realize the significance of many symptoms/lab values to mito--so as you know its important to talk to someone who knows. All the best to you and your daughter. Randee Bates mom to age 5--?mito/genetic disorder, ph 10 and Kerri 8, wife to Dru -- In Mito , " halilemas <mclay@w...> " <mclay@w...> wrote: > Hi my name is Amy. I have a daughter who is now 7 that was diagnosed > with complex IV deficiency and now lactic acidosis. When we first > started all of this, we were told that from a chest xray that her > heart was a little big. We then were sent to a cardiologist who > diagnosed her with hypertrophic cardiomyopathy. It tooks us almost > five years to find out the cause. Then it took me another year to > find someone who knew anything about it. Finally I joined UMDF and > found a doctor close to home at the cleveland clinic, Dr. Bruce Cohen. > He has been wonderful. We were always told her lactic acid levels > were a little elevated, but were told not to worry. This time we got > a copy of the results from her last visit and her lactic acid levels > went from 2.6 in july 2003 to 4.2 in december 2003. Now I am very > worried because everything I have read says that anything over 5 can > be deadly. I am supposed to worry? Wouldn't the doctor call if he was > worried? Does any one know if this is high? They also did an amino > acid test, which no one has ever done before, and she had 12 amino > acids that were elevated. The highest was something called Alanine. > Does anyone know what that is? I have researched so much over the > last seven years and I still feel like I don't know enough. It is > always something new. More symptoms, different symptoms. I was told > until I saw Dr. Cohen that my daughter Lindsey would never have any > problems from this. Now she has fatigue, migraines, muscle aches, > stomach pain, reflux, hyperventilation, and she gets sick so easy. > Please if anyone could help, it would be greatly appreciated! > > Thank You, > Amy > mother of Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Amy, Quickly as I am on my way out the door. Elavated alanine ( an amino acid) is an indicator of Lactic acidosis. If one then the other. Having a complete Amino panel (blood) is how I got my first " medical validation " that something was not right with my daughter. But that was only after I got a copy of the report. Not the summary. (always get the report) the summary said " everything was with in the normal range and did not indicate a known metabolic disorder. " Those are important words- " known " as the years went by I saw those statements often. I made a spread sheet of the results from that panel and highlighted in red any of the values that were either at the very low end or very high end. Obviously a pattern emerged. With that in hand I was able to get to see a neurologist and get her to " pay attention " . There is an excellent book I would recommend for all inetrersted in knowing more about amino acids. Very easy to read, very informative. with the info I gleemed from that book I could see why some of her levels were the way they were. Also, someone else posted about the proper procedure to draw blood for lactate. We had so many test that ended up producing junk data because of improper drawing procedure. One needs to be a strong advocate for your child, and this was one area were it was very necessary. Blood drawing. ammonia and lactate. both tests that are taken quite a bit for children with mito issues. We ended up requesting a " recipe card " from the neuro-specifiying the requirements for the lab folks. Dang, well know I can't find the amino book, must have loaned it out. I want to say the authors name is Chatrow? I'll do a search when I get home. ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 http://www.emedicine.com/emerg/topic291.htm This is one of the web sites that I read about lactic acid. I'm not sure if it is correct, but I'm not sure about much anymore. Amy Re: Lactic Acid Levels Hi Amy, I am certain that our kids are very different here.. but my son has autism and suspected mito disorder and one of the main reasons for suspicion is his history of high lactate acid levels.. I was told that 2.2 was normal and he has been as high as 11.3. He does not get tested much... but last summer when he regressed in eating and ability to pass feces and has been on mito cocktail his levels were like 3.4 and I was told that that is good for him.. at least they did not think we could ever find the normal zone. But the reason I wanted to write is that I was told that some labs have different ways or there is another different way that the result levels are read. And have also been told to make sure the test is done a certain way for years.. such as no tourniquet and put on ice immediately and I have seen more screw ups than what doctor feels like is right. The interesting thing was last summer in ER .. the blood person tried the test both ways and sa id the levels came out close to the same either way. At least he appeased what I was always told to advocate for with that test. I have not come across info saying over 5 one could die.. do you know where you found that article? This broad category seems to affect each individual differently. Keep searching and asking and best of luck.. KathyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 http://www.emedicine.com/emerg/topic291.htm This is one of the web sites that I read about lactic acid. I'm not sure if it is correct, but I'm not sure about much anymore. Amy Re: Lactic Acid Levels Hi Amy, I am certain that our kids are very different here.. but my son has autism and suspected mito disorder and one of the main reasons for suspicion is his history of high lactate acid levels.. I was told that 2.2 was normal and he has been as high as 11.3. He does not get tested much... but last summer when he regressed in eating and ability to pass feces and has been on mito cocktail his levels were like 3.4 and I was told that that is good for him.. at least they did not think we could ever find the normal zone. But the reason I wanted to write is that I was told that some labs have different ways or there is another different way that the result levels are read. And have also been told to make sure the test is done a certain way for years.. such as no tourniquet and put on ice immediately and I have seen more screw ups than what doctor feels like is right. The interesting thing was last summer in ER .. the blood person tried the test both ways and sa id the levels came out close to the same either way. At least he appeased what I was always told to advocate for with that test. I have not come across info saying over 5 one could die.. do you know where you found that article? This broad category seems to affect each individual differently. Keep searching and asking and best of luck.. KathyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 http://www.emedicine.com/emerg/topic291.htm This is one of the web sites that I read about lactic acid. I'm not sure if it is correct, but I'm not sure about much anymore. Amy Re: Lactic Acid Levels Hi Amy, I am certain that our kids are very different here.. but my son has autism and suspected mito disorder and one of the main reasons for suspicion is his history of high lactate acid levels.. I was told that 2.2 was normal and he has been as high as 11.3. He does not get tested much... but last summer when he regressed in eating and ability to pass feces and has been on mito cocktail his levels were like 3.4 and I was told that that is good for him.. at least they did not think we could ever find the normal zone. But the reason I wanted to write is that I was told that some labs have different ways or there is another different way that the result levels are read. And have also been told to make sure the test is done a certain way for years.. such as no tourniquet and put on ice immediately and I have seen more screw ups than what doctor feels like is right. The interesting thing was last summer in ER .. the blood person tried the test both ways and sa id the levels came out close to the same either way. At least he appeased what I was always told to advocate for with that test. I have not come across info saying over 5 one could die.. do you know where you found that article? This broad category seems to affect each individual differently. Keep searching and asking and best of luck.. KathyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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