Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Marie, My son did get diagnosis of probable Mito because of his lactate levels. Yet pyruvate dehydrongenase disorder was never ruled out by muscle biopsy. Because of lack of insurance, or no place in this state or maybe he was never really sick enough and came out of his episodes of regression and eating and constipation. When Dr of Genetics looked back into his history of bloodwork it was obvious that when he was younger that that was very high along with his liver enzymes and glucose levels. She asked around and spoke to Dr. Kelley in Baltimore and it was suggested along with putting him on the mito cocktail. When I was new to this I had seen others say different levels or method was used to measure it. My son's was as high as 11.3 and normal was 2.2 at whatever labs did his tests. After a year on many crusched vitamins and coenzyme Q 10 and carnitor the level dropped to 3.3 . Dr. felt we would never get it actually back to below normal levels. It kept that low even just on carnitor and co-Q10 for a few years. I have not have him tested in a few years now. Dr. was hoping to prove this as his cause of autism... but never really was able to make that statement. Well it might be his... but he is different than most of the kids in area with autism. And yes, she says to have lactate bloodwork done without a touniquet. One way to get around the people taking blood not wanting to do that especially with a kid thashing all over the place is to run another blood test first. Then they can use the touniquet , get the blood going and remove it for the lactate test. It should also be put on ice i mmediately. I can't tell you how many times the test was no good to the fact of no ice or they used the touniquet or put wrong color stopper, or blood was to old to be acurrately tested. One time in ER on the weekend and not able to get ahold of Dr. one bloodwork guy did it both ways, cause he had never heard of that. It was abit higher without the touniquet, but not a big difference. So it is hard to convince them to do it without, yet Dr. insists on that reading. My son would have so much frightened energy, he could be so strong. One place we went to used to have a kidney dialysis chair that we would put him in and 4 other people along with myself to hold him down. Another thing I had to watch for is if the person holding his arm that blood is being drawn from isn't holding his upper arm so tightly that that in effect could act like a touniquet is used. It looks like your child's test was done by the other measurements that others have had, as 16 would be really high. Do you know what the normals are. Hope this helps. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 How high lactate blood levels should be to consider a diagnosis of mitochondrial disease based on that solely? I have been looking for information on lactate levels in blood on the internet and I have found out that depending on the laboratory the normal range of this test would vary. My son's lactate level in blood are high according to the laboratory that did the analysis however it would be within range according to other laboratories. Could any one share with me how high your child with mito disease lactate levels are? My son lactate was 16 mg/dl (high but not too high) I have also read that special measures should be taken to have accurate results (ei. no torniquet when blood is drawn, no exercise before the test, fasting, etc.). My son fights like a tiger whenever blood is drawn and a torniquet needs to be used with him since his veins are small and hard to find. Did your laboratory took special measures when drawing blood for this test? TIA Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 When we did our lactates, I would call the lab ahead so they could look up the protocol while we are there... is there anything like stickers, toys or candy or anything you can try to bribe him with to not fight? Its pretty important to get an accurate result. mom to (07.04.96-05.26.03) with Mitochondrial disease, complex I and IV....Gaige, 5, with High Functioning Autism...Bliss, 3, with very very mild cerebral palsy ...True, born 01.18.05, with Sickle Cell Disease and GERD and married to one swell man! www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
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