Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Anne, hi. I am new to the list. I am curious about 3-methylhistidine as this is one of the abnormalities for my child. His is low. Could you tell me about your Sam who is low also? is he diagnosed with mito as well as Zachary? I have not been able to find much info on 3-methylhistadine. we are waiting for preliminary test results. are in same boat as Beth. my 6 yo is diagnosed autistic. but his neuro thinks mito/muscular dystrophy are potential diagnoses also. at times, he almost seems completely well, then plummets quite quickly. cara " Anne K. Juhlmann " wrote: > Beth, I have not forgotten your question which I think as what is the Dr. > looking for when he does this test each month. My impression was it is > some sort of a measure of nutritional status/kidney function. But I am not > too clear. I need tot talk to him about it in t he next week or so and I > will try to get an answer. I guess at CHW the normal is 100-400 or > somewhere along there. Zachary's was 2000 last month and this month it is > 3500. So I am concerned. We had repeated it because the Dr thought it had > to be invalid. I saw the nephrologist today in t he sky walk and asked her > but she was not sure what exactly it was looking at either and was going to > call him since he ordered it. I'd be interested in anything you know about > it. Thanks. Anne > PS Sam's on the other hand is low - very confusing to me > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > http://click./1/2646/1/_/368657/_/954443714/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Cara Welcome to the list I actually do not know why Sam's is low. But I don't think it is necessarily a bad thing. I think from what I have understood from our MD that my son with the high level is the big concern - not Sammy with the low. Basically it seems that it is a result of protein breakdown from the muscle. Normal athletes do it and there was a lot of information on the web about different products that would supposedly help this. But when I did a medline search the answer did not appear so easy. There have been numerous studies done to see what might affect this level and help it to decrease. many of the studies pertained to a child in ICU or after surgery where protein breakdown is very high. Does not seem to be too much of a consensus what helps. My Sam with the low levels is on growth hormone therapy. My Zach is not although he is partially deficient and officially has failed the GH stim test. This led our MD and I to question whether the anabolic effects of GH are why Sammy's levels are low to normal in his urine whereas in Zach they are not. This especially our question because Sammy is really the one who has persistent low albumin and protein levels in his blood. In fact we repeated the tests on the kids because our MD and I were sure the lab had switched their samples. At any rate we have a suspicion that if we give Zachary GH that we will see the 3 methylhistidine levels decrease in his urine, (and therefore less protein breakdown). At least that is our little experiment we are doing. Our MD is an HIV doctor and he has a lot of experience with following these levels in that population. We ran it by the endocrinologist and he was all for it - so we will use the 3 methylhistidine and a body composition test as our baseline and then follow every 3 months and see what we see. Sorry to be so long answering. I wanted to wait and ask our MD about the low levels and I did not have a chance to ask him about it until yesterday. where are you at with the diagnostic stuff- labs? biopsy yet? Let us all know how we can help as you go through this diagnostic stuff and I am sure have many many questions. We were all there at one time or another or are there now . Anne ---------- > > To: Mito@... > Subject: Re: 3 methylhistidine > Date: Friday, March 31, 2000 11:27 AM > > Anne, hi. I am new to the list. I am curious about 3-methylhistidine as this is one of the abnormalities > for my child. His is low. Could you tell me about your Sam who is low also? is he diagnosed with mito > as well as Zachary? I have not been able to find much info on 3-methylhistadine. > > we are waiting for preliminary test results. are in same boat as Beth. my 6 yo is diagnosed autistic. > but his neuro thinks mito/muscular dystrophy are potential diagnoses also. at times, he almost seems > completely well, then plummets quite quickly. > > cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2000 Report Share Posted April 9, 2000 Anne, thank you for answering my question about 3 methylhistidine. I also appreciate your asking your doctor for more info. We are in the beginning of testing for metabolic and organic problems. my is 6.5 and we have just recently found a doctor willing to do testing. Beth Mortl introduced me to this list. My child is also diagnosed with autism and has had no testing unless i have screamed for it. He has muscle problems, headaches, sub seizure episodes, peripheral neuropathy, antibodies against his myelin, gut problems, constant diarrhea. It is amazing to me how much overlap there is between the kids with autism and the kids with diagnosed mito disorders. has real up and down periods. He seems to have an atypical form of muscular dystrophy. This list is really blowing me away with all the connections I see for my child. but we are fortunate in that even though he is often sick for weeks at a time, he can walk, talk now (non-verbal until 4.5), eats normally (on very restricted diet however). Interesting to me that bethanochol was mentioned in another post. This is a hot topic right now in autism land. Several moms on the autism list are having their children screened for mito. It will be interesting to see what develops. They say there is a wide autistic 'spectrum' - with autism, PDD, ADHD all on a scale. Perhaps mito fits on this 'number line' also. We are using CoQ10 and have seen improvements in speech enunciation, and being able to ride a bike and actually get pedals all the way around, willingness to try to throw a ball, etc. Thanks, again, Anne, you are very informative. cara gr. rapids, Michigan " Anne K. Juhlmann " wrote: > Cara > Welcome to the list > I actually do not know why Sam's is low. But I don't think it is > necessarily a bad thing. I think from what I have understood from our MD > that my son with the high level is the big concern - not Sammy with the > low. > > Basically it seems that it is a result of protein breakdown from the > muscle. Normal athletes do it and there was a lot of information on the > web about different products that would supposedly help this. But when I > did a medline search the answer did not appear so easy. There have been > numerous studies done to see what might affect this level and help it to > decrease. many of the studies pertained to a child in ICU or after surgery > where protein breakdown is very high. Does not seem to be too much of a > consensus what helps. > > My Sam with the low levels is on growth hormone therapy. My Zach is not > although he is partially deficient and officially has failed the GH stim > test. This led our MD and I to question whether the anabolic effects of GH > are why Sammy's levels are low to normal in his urine whereas in Zach they > are not. This especially our question because Sammy is really the one who > has persistent low albumin and protein levels in his blood. In fact we > repeated the tests on the kids because our MD and I were sure the lab had > switched their samples. > > At any rate we have a suspicion that if we give Zachary GH that we will see > the 3 methylhistidine levels decrease in his urine, (and therefore less > protein breakdown). At least that is our little experiment we are doing. > Our MD is an HIV doctor and he has a lot of experience with following these > levels in that population. We ran it by the endocrinologist and he was all > for it - so we will use the 3 methylhistidine and a body composition test > as our baseline and then follow every 3 months and see what we see. > > Sorry to be so long answering. I wanted to wait and ask our MD about the > low levels and I did not have a chance to ask him about it until yesterday. > > where are you at with the diagnostic stuff- labs? biopsy yet? Let us all > know how we can help as you go through this diagnostic stuff and I am sure > have many many questions. We were all there at one time or another or are > there now . > > Anne > > ---------- > > > > To: Mito@... > > Subject: Re: 3 methylhistidine > > Date: Friday, March 31, 2000 11:27 AM > > > > Anne, hi. I am new to the list. I am curious about 3-methylhistidine as > this is one of the abnormalities > > for my child. His is low. Could you tell me about your Sam who is low > also? is he diagnosed with mito > > as well as Zachary? I have not been able to find much info on > 3-methylhistadine. > > > > we are waiting for preliminary test results. are in same boat as Beth. > my 6 yo is diagnosed autistic. > > but his neuro thinks mito/muscular dystrophy are potential diagnoses > also. at times, he almost seems > > completely well, then plummets quite quickly. > > > > cara > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2121/1/_/368657/_/955142266/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
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