Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 it varies based on your kids mito needs. our mito cocktail is carnitor, coq10, flaxseed and a strictly maintained protein/carb ratio every 2-3hrs. my son has a confirmed mito complex 1 disorder and autism. i often wondered the same thing before the mito dx last year. hugs > > I was just wanting to know exactly what the MITO coctail was. Is > there a particular " recipe " ? or is a product's brand name? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Oh, gee, guess I really don't understand. Can someone send me somewhere so I can read about MITO complex? I am guessing it is an acronym for something? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 > > I was just wanting to know exactly what the MITO coctail was. Is > there a particular " recipe " ? or is a product's brand name? I wrote my son's experience, including a list of the supplements that make up " mito cocktail " , on this page http://www.danasview.net/mar05.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 How does one determine a mito disorder? Thanks, On 8/31/06, tatumcrew <tatumcrew@...> wrote: > > it varies based on your kids mito needs. our mito cocktail is > carnitor, coq10, flaxseed and a strictly maintained protein/carb ratio > every 2-3hrs. my son has a confirmed mito complex 1 disorder and > autism. i often wondered the same thing before the mito dx last > year. hugs > > > > > > I was just wanting to know exactly what the MITO coctail was. Is > > there a particular " recipe " ? or is a product's brand name? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 it's a blood test followed by a " protein " push and then more blood about an hour 1/2 later. At least that was how my dr. did it. Mommy Boy <mommy.boy@...> wrote: How does one determine a mito disorder? Thanks, On 8/31/06, tatumcrew <tatumcrew@...> wrote: > > it varies based on your kids mito needs. our mito cocktail is > carnitor, coq10, flaxseed and a strictly maintained protein/carb ratio > every 2-3hrs. my son has a confirmed mito complex 1 disorder and > autism. i often wondered the same thing before the mito dx last > year. hugs > > > > > > I was just wanting to know exactly what the MITO coctail was. Is > > there a particular " recipe " ? or is a product's brand name? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 You can also test pyruvate acid and lactic acid levels, they will be highly elevated if there are mitochondrial issues, particularly of the genetic kind. Most mercury poisoned kids have mild to moderate elevations of pyruvate and sometimes lactic acid. Another easy way is to give the supplements in the cocktail and see if he/she improves. Re: Re: MITO coctail > it's a blood test followed by a " protein " push and then more blood about > an hour 1/2 later. At least that was how my dr. did it. > > Mommy Boy <mommy.boy@...> wrote: How does one determine a > mito disorder? > > Thanks, > > > On 8/31/06, tatumcrew <tatumcrew@...> wrote: >> >> it varies based on your kids mito needs. our mito cocktail is >> carnitor, coq10, flaxseed and a strictly maintained protein/carb ratio >> every 2-3hrs. my son has a confirmed mito complex 1 disorder and >> autism. i often wondered the same thing before the mito dx last >> year. hugs >> >> >> > >> > I was just wanting to know exactly what the MITO coctail was. Is >> > there a particular " recipe " ? or is a product's brand name? >> > >> >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 Hi, I'm an occasional lurker. A mainstream neurologist has just recommended a mito evaluation for my son based on his pattern of intermittent regressions. She says it must be diagnosed by muscle biopsy, which requires a trip to Atlanta or one of 4-5 other mito centers in the US. She never mentioned about other diagnostic methods, except to mention she'd do some pre-screening locally then consult with Dr. Shoffner in Atlanta (Horizon Medicine) to see if a muscle biopsy was indicated. Does anyone have any good links describing mitochondrial disease? I need to get educated fast. Suzanne > > > > I was just wanting to know exactly what the MITO coctail was. Is > > there a particular " recipe " ? or is a product's brand name? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2006 Report Share Posted September 2, 2006 I happen to have my son's Metametrix ION panel in front of me. Under the category of " Mitochondrial Functional Impairment " they list the following markers: magnesium CoQ10 Adipate Suberate EtMal Pyruvate Lactate AHB BHB Succinate Fumarate Malate Unfortunately I don't know what most of these even are but I must find out because his test result showed " high significance " in this area. I don't know if this really helps address the original question, but I would recommend the ION panel for anyone who is struggling to figure out their child's nutritional status. Anita > > You can also test pyruvate acid and lactic acid levels, they will be highly > elevated if there are mitochondrial issues, particularly of the genetic > kind. > > Most mercury poisoned kids have mild to moderate elevations of pyruvate and > sometimes lactic acid. > > Another easy way is to give the supplements in the cocktail and see if > he/she improves. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 Hi, Go to www.umdf.org. It has comprehensive information on testing, as well as on the cocktail. My kids were diagnosed by Dr. Shoffner in Atlanta. It took three years of very complex testing, including some of the tests others have mentioned as well as *many* others, before we were sent to Atlanta to see Dr. Shoffner. Mito is not a casual diagnosis. Kids can have it, even when initial testing doesn't indicate it. Also, mito affects everything with your child. Many treatments that may be relatively harmless for other kids can be dangerous for kids with mito -- HBOT, for instance. You really need a classically trained *creative* geneticist. The best are Dr. Natowicz at the Cleveland Clinic, Dr. Shoffner in Atlanta, and Dr. Kelley at the Kennedy-Krieger Clinic at s Hopkins. B. > > > > > > I was just wanting to know exactly what the MITO coctail was. > Is > > > there a particular " recipe " ? or is a product's brand name? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 , thank you so much for posting this. I am very reassured that our neurologist spotted this and wants to consult immediately with Dr. Shoffner once the initial test results are in. In your best guess, do you think you would have gotten an accurate diagnosis earlier than 3 years if you had seen Dr. Shoffner early on in the process? What about HBOT is damaging? We did HBOT this spring (just 20 dives plus a few more " freebies " ) and have seen no immediate or direct problems, but there was a regression about 2 months later that we haven't been able to pin to anything (except perhaps the Pentasa we were trialing). HBOT did seem to help his gut and his sleep, which were very bad and now are much better. He had a bad summer with a loss of skills, but he was already on this trajectory since early spring before the HBOT, and the regression didn't worsen til 2 months after the HBOT. Plus, he has started to suddenly regain many of the lost skills, probably due to 1) stronger probiotics (all D- lactate free, he was diagnosed with acidosis last year), 2) finally finding an enzyme that works (he has severe allergies), and 3) a curious regaining of skills that may have been provoked by a long, bad viral illness that may have provoked seizures (still evaluating those). We are in Virginia, so are close to Atlanta as well as KKI, but our doc works with Shoffner primarily. Thank you for the information and the link - are there any others that are good? Suzanne > > > > > > > > I was just wanting to know exactly what the MITO coctail was. > > Is > > > > there a particular " recipe " ? or is a product's brand name? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 Hi, I do think we would have gotten a diagnosis sooner if we had seen Dr. Shoffner sooner. We had our first muscle biopsy in Boston, where they freeze the tissue and send it elsewhere for testing. Freezing can change the morphology. Plus there are enzyme tests they do in Atlanta they can't do in Boston. It was the enzyme tests that were our smoking gun. One of the reasons it took us so long to be referred to Dr. Shoffner was that we started down this path in 1998, and the science has moved very quickly since then. As far as the HBOT goes, my assumption is that it places energetic stress on the body, and energy is precisely what mito kids are lacking. I would guess some mito kids just don't have enough energy to tolerate the process, and there's no way to tell ahead of time who does. Similarly, my son does fairly well when he gets sick, but some mito kids wind up in the hospital on i.v.'s almost every time. The nasty thing, of course, is that you have to be careful not to put the kids in energy draining situations -- not only can mito be progressive, a strain on the system can cause the progression. For instance, my son had his first soft signs of autism after he got the chicken pox. More signs came after the MMR, and then he had his 18 month vaccines followed within two weeks by a double ear infection and two courses of anti-biotics. It was like he fell off a cliff in slow motion. My daughter, who also has mito, had clear issues almost from birth. Yet she didn't have any strains on the system during critical periods of development and she is now much higher functioning than my son -- she's a sophomore at a Waldorf High School, where she is doing just fine with accomodations. My son, on the other hand, is in a 1:1 ABA school at age 15,and speaks in 3 word utterances. But good things can (and do) happen for my son. Enzymes have been very helpful, as have the mito cocktail, selenium, zovirax, anti-fungals and olive leaf extract. You are finding a lot of interventions at a much younger age than we did. GFCF was state-of-the-art ten years ago. Before I try anything new, though, I always search medline to see if it has a negative effect on the mitochondria. Oh, as for other links, check out the group meta-mito-autism. Hope this helps, B. > > > > > > > > > > I was just wanting to know exactly what the MITO coctail > was. > > > Is > > > > > there a particular " recipe " ? or is a product's brand name? > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 i know my son who was dx'd with autism at 19mos and mito complex 1 at 4.5yrs old would have gotten an early mito dx if we had followed my gut and seen shoffner 2yrs earlier. our ped kept making me feel that his wierd ways of handling illnesses were normal for him and nothing to be alarmed about. for instance, 9am, fine normal, no fever at all 97.1, normal hyper energy level 10am-same 11am-intense sudden lethargy-can barely keep eyes open or even stand 11:15 sudden fever of 100.3 11:22 febrile seizures he has other problems but that was what i kept questioning, how his body responds to crisis.....a muscle biopsy by shoffner confirmed the dx last fall. if the dan docs and mito docs would put their fueds aside, we might actuall get some real answers about our kids wacky systems and the best ways to help them. in a round about way, most say the same things and recommend the same supplements. that said, shoffner is not cheap!! 10K plus for the biopsy when not covered by insurance. we live in atlanta, and see shoffners partner fran kendall for mito f/u's. but we are still so new to the mito area that i am still muddling my way thru the maze. as for HBOT, i've heard its more helpful for mito kids...now im really confused. hugs > > > > > > > > > > I was just wanting to know exactly what the MITO coctail > was. > > > Is > > > > > there a particular " recipe " ? or is a product's brand name? > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 i know my son who was dx'd with autism at 19mos and mito complex 1 at 4.5yrs old would have gotten an early mito dx if we had followed my gut and seen shoffner 2yrs earlier. our ped kept making me feel that his wierd ways of handling illnesses were normal for him and nothing to be alarmed about. for instance, 9am, fine normal, no fever at all 97.1, normal hyper energy level 10am-same 11am-intense sudden lethargy-can barely keep eyes open or even stand 11:15 sudden fever of 100.3 11:22 febrile seizures he has other problems but that was what i kept questioning, how his body responds to crisis.....a muscle biopsy by shoffner confirmed the dx last fall. if the dan docs and mito docs would put their fueds aside, we might actuall get some real answers about our kids wacky systems and the best ways to help them. in a round about way, most say the same things and recommend the same supplements. that said, shoffner is not cheap!! 10K plus for the biopsy when not covered by insurance. we live in atlanta, and see shoffners partner fran kendall for mito f/u's. but we are still so new to the mito area that i am still muddling my way thru the maze. as for HBOT, i've heard its more helpful for mito kids...now im really confused. hugs > > > > > > > > > > I was just wanting to know exactly what the MITO coctail > was. > > > Is > > > > > there a particular " recipe " ? or is a product's brand name? > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Is it typical for insurance to not cover the biopsy? That's alarming. We didn't see Krigsman b/c of cost, and I'd hate to have to make a decision like that twice. We pay $60k a year for ABA school, going on 3 years now, and these are hard choices for parents to have to make. Suzanne > > > > > > > > > > > > I was just wanting to know exactly what the MITO coctail > > was. > > > > Is > > > > > > there a particular " recipe " ? or is a product's brand name? > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 > > How does one determine a mito disorder? I figured it out because every time I tried to give my son fats/EFAs, they made him very mean and aggressive. Adding the components of mito cocktail, plus taurine, eliminated that problem and I saw a lot of improvement. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 we have a self funded cigna plan that paid out of network 75%, we have a ga medicaid waiver as secondary. shoffners office will not file medicaid but told me that the difference would be written off once a denial from medicaid was rec'd. we finally got the denial from medicaid (denied b/c i submitted and not drs office btw). we are fueding with the billing person (had a change of personnel who now tells me they have no such write off policy) over the remaining $3k to shoffners office. the hospital/lab bills etc were all covered by our 2 insurances. and yes it sucks to have to make such decisions and the ultimate deciding factor boiling down to money in most cases. hugs > > > > > > > > > > > > > > I was just wanting to know exactly what the MITO coctail > > > was. > > > > > Is > > > > > > > there a particular " recipe " ? or is a product's brand > name? > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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