Re: Have question regarding lactate/pyruvate

[Guest guest]

From what Dr. Cohen told me, if she is calm before they stick her it will be ok. He was more worried about her being stressed right before they ran these tests. I was instructed to get her lunch, calm her down and make sure she is not tired, ect. before the test. I know this seem unrealistic but it works. I was also very worried, because at the time she was having these tests, she was also getting blood drawn every day because her liver was really bad at that time. We eventually found one or two lab people who know Gracie very well, we ask for them all the time, and when it is an important time they always know how to get it done fast. Believe it or not but she is 18 months old now, and very rarely cries when getting blood drawn.

[Guest guest]

From what Dr. Cohen told me, if she is calm before they stick her it will be ok. He was more worried about her being stressed right before they ran these tests. I was instructed to get her lunch, calm her down and make sure she is not tired, ect. before the test. I know this seem unrealistic but it works. I was also very worried, because at the time she was having these tests, she was also getting blood drawn every day because her liver was really bad at that time. We eventually found one or two lab people who know Gracie very well, we ask for them all the time, and when it is an important time they always know how to get it done fast. Believe it or not but she is 18 months old now, and very rarely cries when getting blood drawn.

[Guest guest]

From what Dr. Cohen told me, if she is calm before they stick her it will be ok. He was more worried about her being stressed right before they ran these tests. I was instructed to get her lunch, calm her down and make sure she is not tired, ect. before the test. I know this seem unrealistic but it works. I was also very worried, because at the time she was having these tests, she was also getting blood drawn every day because her liver was really bad at that time. We eventually found one or two lab people who know Gracie very well, we ask for them all the time, and when it is an important time they always know how to get it done fast. Believe it or not but she is 18 months old now, and very rarely cries when getting blood drawn.

[Guest guest]

Deborah,

I have twin daughters, age 26 months who have a partial complex I mito disorder. They are and have always been developmentally right on. Unfortunately, they have seizures. The only other clue to us was their lactate level being slightly elevated. They have recently been diagnosed with hypotonia and muscle myoclonus also.

I know when the girls have had their lactate levels tested, they did a test with a tourniquet on the first time. They restested it again after finding it elevated and did an arterial stick the next time. The results were very close (I think 1 point off.) Needless to say, they were a little more upset with the arterial stick so I don't think crying would make a huge difference.

I guess I would push for further blood testing before doing a muscle biopsy. Check out www.umdf.org for a list of tests that can be run. Sounds like you have a good doctor already who at least knows something about mito. (It's rare to find a primary doctor who does...)

Good luck in your journey to find a diagnosis.

Kim Novy

Mom to and Lindsey (2) Partial Complex I

Delaney (6) - Healthy

Mason (4) - Healthy

Have question regarding lactate/pyruvate

HiI'm really not sure if my daughter Paige, 20 months, has mito or a metabolic disorder and the doctor is really scaring me. I wanted to get input from other parents of children with this. Please let me know if this is a sign of mito/metabolic disorder or if we need to do more tests.Paige had her blood drawn twice and both times her lactate and pyruvate were elevated. I read that it can be elevated due to their being agitated/crying. Well, how do you stop a 20 month old from crying when she is getting blood drawn? Her lactate came back slightly elevated at 2.3 (normal range is up to 2.0) and pyruvate came back at .83 (normal is up to .8 I believe). They said her ratio is 27.1 and it should be between 10-20.She has no other symptoms other than hypotonia. She was late meeting her milestones but can now crawl well, sit, roll etc. She can stand holding onto something but not by herself yet. She has excellent fine motor skills, no seizures or any signs of brain disorders, has about 20 words and babbles nonstop, no digestive/feeding problems and no respiratory problems.Her only symptom is the hypotonia. Should I be concerned? Is there addl testing that should be done? The doctor wants to do an EMG next and I know there is a muscle biopsy.Could the lactate/pyruvate results be a result of just crying? Please let me know what you think. I am very worried. Thanks.DeborahPlease contact mito-owner with any problems or questions.