lactic acid

[Guest guest]

Re: lactic acid levels as a symptom of Mito

When Zach was about 15 months old he had his first levels drawn and it was

30, (5-15 at our lab = normal). We were told that this could not be real

and so to repeat it. It was

normal. And so it went through the years - lactic acids that were high ,

then normal, CO2's as low as 11 for no apparent reason and then normal.

And always the abnormal ones must be lab error - the normal ones were to

be believed because he could walk and talk and was not cognitively affected

in

any way. His medical problems were just unrelated - bad luck to have more

than one they said.

Fortunately through the many years of not having a diagnosis, there were 2

doctors that maintained that this was not normal and that he had a Mito

disorder. They maintained this despite non specific results showing just

a neuromuscular disease

at age 2. At age 6 a repeat biopsy showed a profound defect in complex 1

and 4.

Dr. Shoffner told me that it is a fallacy that lactic acid levels have to

be abnormal to have Mito, that this is one of the biggest myths he still

encounters and that unless serial levels were to be drawn through each day

it is sometimes impossible to catch it in people who do not have lactic

acidosis 100% of the time. He told me " don't let anyone ever tell you that

normal levels rule out mitochondrial disease. "

To demonstrate this further my children have their levels measured

probably more than anyone on this list. Regularly they are measured 2

times a week and when in the hospital they are measured 2 times a day.

(they have central lines so drawing blood is painless)

Some days they are in the thirties and some days they are normal and then

they are mildly elevated and then not, etc. etc. And so if we were to only

measure once every few months like most of you do - it is very likely we

would not have a clue that the kids have chronic lactic acidosis because

it is only one measurement out of many hours and days.

The best thing to do if you only measure sporadically is to have a

standing order at your lab to draw the levels when your child's sick with a

fever. For years we had an order like that which also included drawing

electrolytes, urine amino and organic acids and serum amino acids. Many

children will only show the abnorlaities in levels when they are stressed,

(ill).

Anne