Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 In a message dated 3/6/2008 3:58:34 P.M. Central Standard Time, fightingautism@... writes: > MITOCHONDRIAL DISORDER. > > LOOK IT UP. > > She isn't even part of the omnibus. Information, it's > a good thing. _WWW.UMDF.ORG_ (http://www.UMDF.ORG) . we have a mito disorder. it's not as rare as people think it's very undiagnosed and if you contact the organization you listed they'll tell you there is an overwhelming amount of people diagnosed with autism who have mito issues, why they are not sure but they consider autism to be a symptom of the mito condition. i also know many kids with mito issues that are diagnosed with autism, the reason they have an autistic diagnosis is that you can't tell them apart from another autistic at all. so it is the same omnibus if the child is diagnosed as autistic as well. i mean they look, act and are indistinguishable to others with autism w/o mito issues. but if you contact the united mitochondrial disease foundation they'll tell you they have an overwhelming amount of autistics who are also dealing with mito issues. in their cases they believe the autism comes as a result of the mito. it's like mine child. she has rett syndrome but she also has autism, they consider her autistic as well, but as a result of her having rett syndrome. some girls with rett syndrome have seizures a few do not. some rett girls are not autistic, many are. but my child is as autistic as mine nephews, just has rett syndrome too. just as hannah polings is as autistic as any other autistic, same issues same characteristics. many kids that are diagnosed autistic but have mito issues are still autistic, forget about the countless kids that are yet undiagnosed. it took over five years for my child to be discovered to have a mito issues. it's very undiagnosed, and it just happened to be because rett syndrome is a known condition that has issues with mitochondria, so it was only form there that we went on and realized that some of mine nephews had it as well which explains how they were rushed to the hospital with seizures and fever after their vaccines. our family has a tendency to suffer encephalitis after vaccines so there was a head's up on that one. we reacted strongly and suddenly from vaccines so we are medically exempt as a family. but there's no tellling how many folks on this list who have autistic children who are also dealing with undiagnosed mito issues. hopefully more awareness into mitochondrial disease and disorder (there's a difference) will change things. if you contact that oprganization they'll also let you know how undiagnosed mito issues can be. there's also mitoaction.org that can tell you more about many folks with autism who they've discovered to have mito issues as well. those kids are still as autistic now as they were before being diagnosed with mito issues as well. there's several yahoo groups. like _Meta-mito-autism _ (mailto:Meta-mito-autism ) which is a group of those autistics that are dealing with metabolic and mitochondria issues as well. not many of those kids lost any autism labels with their diagnosis of mitochondrial disorder, usually the few that have labels changed on them their autism simply becomes a symptom of the mitochondrial disorder, just as much as their gastro issues, seizures and more does. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Who are considered the best doctors in the nation to diagnose mito disorders in those with autism? I've thought for a while about Allie undergoing a muscle biopsy, but if I'm gonna put her through that I want to be CERTAIN I have the right person who will run ALL the tests needed. TIA, Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 OK I just have a question call it stupid but I just don't get it. What is the difference between Hannah's case and ours? My daughter was fine until the MMR shot at 18 months. The only difference is that my pediatrician (like most) tell you that all those side effects are normal, just give them tylenol,cream,etc. I never reported anything to the Vaccine injury whatever it's called because I didn't know. Yesterday on Larry King Live they said there are 5000 or 4000 cases pending in to be heard, obviously that is not even close to all the children and adults that have been affected by Autism. I just don't understand... (Nevaeh's mom) confused > > Who are considered the best doctors in the nation to diagnose mito > disorders in those with autism? I've thought for a while about Allie > undergoing a muscle biopsy, but if I'm gonna put her through that I > want to be CERTAIN I have the right person who will run ALL the tests > needed. > > TIA, > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Has it been less than 36 months from the date the vaccine was given, or onset of injuries, I can't remember which it is? If not, then you still have time to file. The problem is we aren't given good info about it. I think ti does say in small letters at the bottom of the fact sheet that a VAERS should be filed, but who of us knew what that was? Actually, doctor's offices are supposed to report if there are any complications, even " just " a fever. But most do not. Maybe if we started reporting them to state licensing boards they might start filing them. I am one of the 5,000 who did file. When I was doing the uatism 101 workshop, I had a copy of a VAERS in the binder and explained what it was for, in case a parent felt it may have been an issue for their child. The information regarding that should be given out at every vaccine, IMO. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 It has been 4 almost 5 years. Nevaeh is my third child and until yesterday I had no clue about the vaccine injury compensation. Maybe they didn't tell me, or I wasn't paying attention but the fact is that it is too late for that now. I even called a friend of mine that her son was just dx 9 months ago, and she didn't even know about it either. I think the pediatricians don't make it well known for their own reasons. > > Has it been less than 36 months from the date the vaccine was given, > or onset of injuries, I can't remember which it is? If not, then you > still have time to file. The problem is we aren't given good info > about it. I think ti does say in small letters at the bottom of the > fact sheet that a VAERS should be filed, but who of us knew what that > was? Actually, doctor's offices are supposed to report if there are > any complications, even " just " a fever. But most do not. Maybe if we > started reporting them to state licensing boards they might start > filing them. > > I am one of the 5,000 who did file. When I was doing the uatism 101 > workshop, I had a copy of a VAERS in the binder and explained what it > was for, in case a parent felt it may have been an issue for their > child. The information regarding that should be given out at every > vaccine, IMO. > > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 > > Who are considered the best doctors in the nation to diagnose mito > disorders in those with autism? I've thought for a while about Allie > undergoing a muscle biopsy, but if I'm gonna put her through that I > want to be CERTAIN I have the right person who will run ALL the tests > needed. > > TIA, > Debi > okay here's the quandry. i'll take you to the steps my brother and sister in law had to take and we imagine many others. it's not so much who's the best in the nation to diagnose it's simply finding mito docs that can diagnose mito issues at all anywhere locally. when first considered a possiblility you may discover like my brother did that there were no mito specialist in any of the local hospitals, on further search you may be stunned to realize there may also be no mito specialists in the state. tests have to be sent out of state and only some well known basic markers for some mito conditions were checked. to actually seeing a mito specialist took navigating a trip out of state, nearly a year later for the very first appointment, crazy travel expenses, fighting with insurance companies that don't want to pay for non emergency out of state doctors or lab work. so basically you can look at maybe two years of getting the answers you need, dropping a small fortune in traveling expenses and medical costs not covered by insurance coverage, fighting with insurance companies just to cover the basics before you get anything near a diagnosis. when it's that much of a mission to get someone to recognize a diagnosis you understand why it's so rare. because people can go ten years even twenty, or their entire lives with a mito issue and never know it because there only a handful of mito specialists in the nation and if there isn't a mito doc in your state you may never get diagnosed. my nephew would have been twelve when he finally got his mito diagnosis, unfortunately he died when he was eleven. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 www.vaers.org The report can be filed online. HTH, Debi > > It has been 4 almost 5 years. Nevaeh is my third child and until > yesterday I had no clue about the vaccine injury compensation. > > Maybe they didn't tell me, or I wasn't paying attention but the fact > is that it is too late for that now. I even called a friend of mine > that her son was just dx 9 months ago, and she didn't even know about > it either. I think the pediatricians don't make it well known for > their own reasons. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Thank you, I wish you were around when my daughter was dx. thanks again, > > > > It has been 4 almost 5 years. Nevaeh is my third child and until > > yesterday I had no clue about the vaccine injury compensation. > > > > Maybe they didn't tell me, or I wasn't paying attention but the fact > > is that it is too late for that now. I even called a friend of mine > > that her son was just dx 9 months ago, and she didn't even know about > > it either. I think the pediatricians don't make it well known for > > their own reasons. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Thank you, I wish you were around when my daughter was dx. thanks again, > > > > It has been 4 almost 5 years. Nevaeh is my third child and until > > yesterday I had no clue about the vaccine injury compensation. > > > > Maybe they didn't tell me, or I wasn't paying attention but the fact > > is that it is too late for that now. I even called a friend of mine > > that her son was just dx 9 months ago, and she didn't even know about > > it either. I think the pediatricians don't make it well known for > > their own reasons. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 I’m right there with you . My daughter is 19 now and was vaccinated from 1989 through early 90’s when the gov. admitted that these vaccines carried the most amounts of ethyl mercury and other heavy metals in their carrying agents. She showed the worst regressions from her MMR shot at 15 months and then again at the 5 year booster. Back then I didn’t know any better. I was actually contacted by an out of state lawyer’s firm when they were looking for people who believed their children’s autism was caused by vaccines as they were interested in bringing a class action suit against the pharmaceutical companies. A representative took all my info but I never heard from them again. I wish someone would investigate the connection between low levels of glutathione our kids possibly have and whether giving them Tylenol after each vaccine (which depletes glutathione levels even further) contributed to the increase as well as the increase of vaccines our children have had to endure over the past 19 years. _____ From: Autism_in_Girls [mailto:Autism_in_Girls ] On Behalf Of nevaehlopez6 Sent: Friday, March 07, 2008 8:27 AM To: Autism_in_Girls Subject: Re: Meet Girl Who Won 1st Vaccine Case OK I just have a question call it stupid but I just don't get it. What is the difference between Hannah's case and ours? My daughter was fine until the MMR shot at 18 months. The only difference is that my pediatrician (like most) tell you that all those side effects are normal, just give them tylenol,cream,-etc. I never reported anything to the Vaccine injury whatever it's called because I didn't know. Yesterday on Larry King Live they said there are 5000 or 4000 cases pending in to be heard, obviously that is not even close to all the children and adults that have been affected by Autism. I just don't understand..-. (Nevaeh's mom) confused > > Who are considered the best doctors in the nation to diagnose mito > disorders in those with autism? I've thought for a while about Allie > undergoing a muscle biopsy, but if I'm gonna put her through that I > want to be CERTAIN I have the right person who will run ALL the tests > needed. > > TIA, > Debi > No virus found in this incoming message. Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.6/1318 - Release Date: 3/7/2008 2:01 PM No virus found in this outgoing message. Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1319 - Release Date: 3/8/2008 10:14 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 I’m right there with you . My daughter is 19 now and was vaccinated from 1989 through early 90’s when the gov. admitted that these vaccines carried the most amounts of ethyl mercury and other heavy metals in their carrying agents. She showed the worst regressions from her MMR shot at 15 months and then again at the 5 year booster. Back then I didn’t know any better. I was actually contacted by an out of state lawyer’s firm when they were looking for people who believed their children’s autism was caused by vaccines as they were interested in bringing a class action suit against the pharmaceutical companies. A representative took all my info but I never heard from them again. I wish someone would investigate the connection between low levels of glutathione our kids possibly have and whether giving them Tylenol after each vaccine (which depletes glutathione levels even further) contributed to the increase as well as the increase of vaccines our children have had to endure over the past 19 years. _____ From: Autism_in_Girls [mailto:Autism_in_Girls ] On Behalf Of nevaehlopez6 Sent: Friday, March 07, 2008 8:27 AM To: Autism_in_Girls Subject: Re: Meet Girl Who Won 1st Vaccine Case OK I just have a question call it stupid but I just don't get it. What is the difference between Hannah's case and ours? My daughter was fine until the MMR shot at 18 months. The only difference is that my pediatrician (like most) tell you that all those side effects are normal, just give them tylenol,cream,-etc. I never reported anything to the Vaccine injury whatever it's called because I didn't know. Yesterday on Larry King Live they said there are 5000 or 4000 cases pending in to be heard, obviously that is not even close to all the children and adults that have been affected by Autism. I just don't understand..-. (Nevaeh's mom) confused > > Who are considered the best doctors in the nation to diagnose mito > disorders in those with autism? I've thought for a while about Allie > undergoing a muscle biopsy, but if I'm gonna put her through that I > want to be CERTAIN I have the right person who will run ALL the tests > needed. > > TIA, > Debi > No virus found in this incoming message. Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.6/1318 - Release Date: 3/7/2008 2:01 PM No virus found in this outgoing message. Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1319 - Release Date: 3/8/2008 10:14 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Jen was born in 1988, is 19 years old and autistic. Bev Weakley > > > > Who are considered the best doctors in the nation to diagnose mito > > disorders in those with autism? I've thought for a while about Allie > > undergoing a muscle biopsy, but if I'm gonna put her through that I > > want to be CERTAIN I have the right person who will run ALL the tests > > needed. > > > > TIA, > > Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Sometimes I feel like the older kids that are toxic are just forgotten the same way that I felt years ago when it seemed like the girls were forgotten. I can see improvement in my daughter with the latest treatment, but it is not fair that my daughter has to suffer. Will the older children ever get justice? Bev Weakley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Perhaps if vaccine cases are continued to be won, there will eventually be recourse for older kids. If it makes you feel any better, if we do win anything, Allie will probably be AT LEAST 19! We filed when she was I think 4, we've not yet had our case heard, she's gonna be 9 in a few months. Debi > > Sometimes I feel like the older kids that are toxic are just forgotten > the same way that I felt years ago when it seemed like the girls were > forgotten. I can see improvement in my daughter with the latest > treatment, but it is not fair that my daughter has to suffer. Will the > older children ever get justice? > Bev Weakley > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 In a message dated 3/10/2008 6:34:12 P.M. Central Daylight Time, kassihatestwistin@... writes: There are, though, lots of kids, LOTS of kids, who are autistic and JUST autistic. we have healthy autistics but that's the small part of us. and there are some autistics that are just autistic but from what i've seen there's more sick autistics than just autistic kids. there are way too many highly medical kids whose symptoms are ignored because it's just lumped into autism. like my late nephew who had severe gastro issues, severe seizures, severe medical issues and it was like oh well this is autism. he passed away when he was eleven, he was diagnosed at age twelve results came in after he died. he was never treated for mito. never diagnosed, never treated until it was too late. i know way too many mito kids where their issues are just considered 'oh that's autism. " and who didn't get treatment or recognition of the severity of their issues until they just got worse and worse. Most autistic kids, I'd wager. If autism is the only " symptom " of mitochondrial disorder someone has-and I don't think that it's even particularly a symptom and my local UMDF people agree with me-then shoving the rather impressive mito cocktail down their throat isn't fair. only a mito doctor or a geneticist with knowledge of biochemistry can prescribe a mito cocktail and that's with a diagnosis of mito. autism is listed as a symptom of mitochondrial conditons. here is an article about the mitochondrial spectrum, (ah geez. another spectrum) autism is on page 5 but you may all find familiar conditions associated with mitochondrial disorders here too. _http://biochemgen.ucsd.edu/mmdc/ep-3-10.pdf_ (http://biochemgen.ucsd.edu/mmdc/ep-3-10.pdf) here's the whole article you can access to. _http://biochemgen.ucsd.edu/mmdc/ep-toc.htm_ (http://biochemgen.ucsd.edu/mmdc/ep-toc.htm) and autism as well is on page 2 of this mito link. but you'll recognize other conditions as well: _http://www.dinet.org/images/Spring2003.pdf_ (http://www.dinet.org/images/Spring2003.pdf) Also Dr. Shoffner a mito expert will be presenting 40 cases of ASD and mito disease at the AAN in April. Nor is doing a muscle biopsy, or even a lactic acid level. Needlephobia can START with a tournequet free blood draw. our kids are so medical that needlephobia is the least of their problems. Hannah isn't representative of the kids who they're trying to sue for. She is drastically different from most of them. She is going to be less healthy, have more hospitalizations, and have DIFFERENT care needs. have you met the kids whose parents are sueing? i've met 20 families. eighteen of them look like hannah or have stories very similar to hannah. actually many of them are in worse shape than hannah. only two of those are the hand flapping JUST autistic case. most of them suffered some sort of encephalophy and so on. they are all highly medical kids. only two of those that i met have minor health issues. They've also stated she no longer fits the definition of autistic, though with the moving house chaos darned if I could find a source for that offhand. yes the parents went through a lot of biomedical stuff with her and she's recovered a great deal. autism has become a catchall phrase for all kids that don't fit tidily into a picture somewhere else. a kid suffers encephalitis or encephalophy and suffers greatly in symptoms after and folks call it autism which is inaccurate as autism is a developmental disorder. the autistic spectrum has become so broad that it is no longer utilized to describe a developmental condition. but to describe after effects of viral injury, vaccine injury, heck any trauma. someone here is diagnosed with autism after a drowning incident. the kid completely changed and it was a drowning incident, trauma!! but they call it autism just cause it looks like autism. since autism is describing a list of behaviors anyone with a certain set of behaviors that looks like autism is being called autistic. my nephews condition was largely ignored due to it being considered simply 'autism' if folks have a highly medical autistic, with many health issues than there's something else going on that they need to check into. there's something more than autism going on. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 In a message dated 3/10/2008 6:34:12 P.M. Central Daylight Time, kassihatestwistin@... writes: It's dangerous to kids to just jump on the next theory, and honestly people really need to know what theyre " hoping for " with this. No, they DON'T want their kids to have mito. Mito doesn't go away, generally doesn't improve, etc. Kassiane if a kid has mito, a kid has mito and it's not going to go away if it goes undiagnosed for years. a kid isn't going to end up with mito simply because parents want it to be mito. mito isn't a theory it's a very undiagnosed condition responsible for hundreds of diseases, and people can live years living with mito and not know it. although treatment can help many. we got lucky with DAN docs but only because they supplemented a lot but they didn't really know what they were looking at although they had a sense of what was happening. so we were seeing a lot of results with DAN before we were finally with a mito specialist. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 In a message dated 3/10/2008 6:23:08 P.M. Central Daylight Time, kassihatestwistin@... writes: Hannah Poling has an INHERITED, from her MOTHER, mitochondrial disease, specifically a complexes I and III defect. You don't get that from anything but inheritence from mito DNA, which you get from yo momma. It's simple science. actually they have the same mutation. which is recognized nonpathenogenic. not disease causing. it's a mutation but a harmless mutation. Dr. Jon polings explained it all to us in the meta mito autism list. so that is inaccurate. she has a mito dysfunction very common in asd's. not the full mito disease type which would have left her with more severe issues. but mito dysfunction which they are finding more and more everyday. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 In a message dated 3/10/2008 6:23:08 P.M. Central Daylight Time, kassihatestwistin@... writes: The omnibus is the whole hunka lotta cases suing the government for autism. She isn't part of that because they don't have ONE OTHER MITO KID in the whole pack. Not ONE. again this is an inaccuracy. they do have more asd's with mito issues in the whole pack as you are stating. i personally know some of them. there are also individuals with mito issues without autism in the whole pack as well as autistic cases with mito issues in the whole pack. how can you say there aren't any mito cases in the whole pack when we ARE another case as well as other people we personally know as well as just know about? i don't get you. my nephew is dead. he is mito he reacted from the vaccine are you stating his case doesn't exist? he's an autistic case with ignored mito, who reacted and regressed and later died from his injuries. so you can't say that at all. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Hannah Poling has an INHERITED, from her MOTHER, mitochondrial disease, specifically a complexes I and III defect. You don't get that from anything but inheritence from mito DNA, which you get from yo momma. It's simple science. The omnibus is the whole hunka lotta cases suing the government for autism. She isn't part of that because they don't have ONE OTHER MITO KID in the whole pack. Not ONE. Kassiane who has high lactic acid numbers but nothing like Miss Hannah's --- Debi wrote: > I'm not following you, she was the first test case > of vaccine court's > ~4,900 to get a ruling. I'm not sure what " omnibus " > means, exactly. > Also not following the mitochondrial issue, that's > part of it all, > some experts believe the vaccines create or > contribute to the > mitochondrial issue, which some also believe is > autism. > > Debi > > > > > > MITOCHONDRIAL DISORDER. > > > > LOOK IT UP. > > > > She isn't even part of the omnibus. Information, > it's > > a good thing. WWW.UMDF.ORG. > > > > Kassiane > > sick of lies. > > > > > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 I've got borderline mito issues myself, I also know exactly where I got them (we have a long line of people with migraines who suddenly die of strokes in spite of being underweight with low cholesterol. it's not exactly surprising that my genetic tests came back with " oh. well. you've got this mutation and suboptimal mitochondrial functioning " ). There are, though, lots of kids, LOTS of kids, who are autistic and JUST autistic. Most autistic kids, I'd wager. If autism is the only " symptom " of mitochondrial disorder someone has-and I don't think that it's even particularly a symptom and my local UMDF people agree with me-then shoving the rather impressive mito cocktail down their throat isn't fair. Nor is doing a muscle biopsy, or even a lactic acid level. Needlephobia can START with a tournequet free blood draw. Hannah isn't representative of the kids who they're trying to sue for. She is drastically different from most of them. She is going to be less healthy, have more hospitalizations, and have DIFFERENT care needs. They've also stated she no longer fits the definition of autistic, though with the moving house chaos darned if I could find a source for that offhand. It's dangerous to kids to just jump on the next theory, and honestly people really need to know what theyre " hoping for " with this. No, they DON'T want their kids to have mito. Mito doesn't go away, generally doesn't improve, etc. Kassiane --- autisticcrystal@... wrote: > > In a message dated 3/6/2008 3:58:34 P.M. Central > Standard Time, > fightingautism@... writes: > > > MITOCHONDRIAL DISORDER. > > > > LOOK IT UP. > > > > She isn't even part of the omnibus. Information, > it's > > a good thing. _WWW.UMDF.ORG_ (http://www.UMDF.ORG) > . > > > > > we have a mito disorder. it's not as rare as people > think it's very > undiagnosed and if you contact the organization you > listed they'll tell you there is > an overwhelming amount of people diagnosed with > autism who have mito issues, > why they are not sure but they consider autism to be > a symptom of the mito > condition. i also know many kids with mito issues > that are diagnosed with > autism, the reason they have an autistic diagnosis > is that you can't tell them > apart from another autistic at all. so it is the > same omnibus if the child is > diagnosed as autistic as well. i mean they look, act > and are indistinguishable > to others with autism w/o mito issues. but if you > contact the united > mitochondrial disease foundation they'll tell you > they have an overwhelming amount of > autistics who are also dealing with mito issues. in > their cases they believe > the autism comes as a result of the mito. it's like > mine child. she has rett > syndrome but she also has autism, they consider her > autistic as well, but as > a result of her having rett syndrome. some girls > with rett syndrome have > seizures a few do not. some rett girls are not > autistic, many are. but my child > is as autistic as mine nephews, just has rett > syndrome too. just as hannah > polings is as autistic as any other autistic, same > issues same > characteristics. many kids that are diagnosed > autistic but have mito issues are still > autistic, forget about the countless kids that are > yet undiagnosed. it took over > five years for my child to be discovered to have a > mito issues. it's very > undiagnosed, and it just happened to be because rett > syndrome is a known condition > that has issues with mitochondria, so it was only > form there that we went on > and realized that some of mine nephews had it as > well which explains how > they were rushed to the hospital with seizures and > fever after their vaccines. > our family has a tendency to suffer encephalitis > after vaccines so there was a > head's up on that one. we reacted strongly and > suddenly from vaccines so we > are medically exempt as a family. > > but there's no tellling how many folks on this list > who have autistic > children who are also dealing with undiagnosed mito > issues. hopefully more > awareness into mitochondrial disease and disorder > (there's a difference) will change > things. if you contact that oprganization they'll > also let you know how > undiagnosed mito issues can be. there's also > mitoaction.org that can tell you > more about many folks with autism who they've > discovered to have mito issues as > well. those kids are still as autistic now as they > were before being > diagnosed with mito issues as well. there's several > yahoo groups. like > _Meta-mito-autism _ > (mailto:Meta-mito-autism ) which is > a > group of those autistics that are dealing with > metabolic and mitochondria issues > as well. not many of those kids lost any autism > labels with their diagnosis > of mitochondrial disorder, usually the few that have > labels changed on them > their autism simply becomes a symptom of the > mitochondrial disorder, just as > much as their gastro issues, seizures and more does. > > > > > > > **************It's Tax Time! Get tips, forms, and > advice on AOL Money & > Finance. > (http://money.aol.com/tax?NCID=aolprf00030000000001) > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 I seriously doubt you have read the medical history of the entire 5,000 cases in vaccine court. I happen to know at least three of the kids, mine being one of them. I can tell you for certain that Allie's lack of mito disorder is not from my trying to find out if she has it. The fact is there are few physicians in this country that can get their heads out of there <insert dirty word> enough to even begin to know how to diagnose such a case. Also, thimerosal has been proven to cause disruptions in mitochondrial function, as do infections, aka, vaccines. As to the other two cases, I don't have the right to disclose their personal medical issues, but to simply put it, you are wrong regarding vaccine court. Nor are the families I know or myself " suing the government for autism, " we're suing because our children had adverse reactions to vaccines, that ended up being autism. That is what the vaccine court is there for and I for one will not feel guilty for trying to seek financial assistance to care for my child, especially since the government was well aware by April 2000 that there was a chance of my child being significantly harmed from vaccines and did not inform me. It's far from " compensation " considering my child has to date been permanently injured, but it will hopefully ensure she won't be locked away at some place to be gang raped the rest of her life. As to Hannah, I've not seen any disclosures of her specific disorder, could you link to where ever her medical history is posted? Debi, who hopefully will get her possible mito issues diagnosed when Dr. Geier takes a look at her - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Kassi, you've not met every family of those in vaccine court. You don't know who they are or what their health issues are. It so happens that my daughter has been less healthy, hospitalized numerous times, and has had CLEAN genetic testing. Nothing. Zilch. It's also dangerous to assume anyone in vaccine court is there with " just autistic " kids. It's also very unfair to have a sick child who was never sick until a hep b vaccine at nine months of age and to watch her be so sick all she can do is pound her fists while she vomits as I rush her to the hospital, yet again. You make assumptions about a group of people that just is not accurate or fair. Debi - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 I don't need to read ALL of them, though if you have them handy I'm hyperlexic. Honestly, 5,000 mito kids would be a lot harder to miss than 5,000 autistic kids. Seriously. Allie, from your description, is one of the kids I can actually see having a metabolic issue. And I have no reason not to trust your description of her. But Allie isn't standard issue autism. Does that make sense? Kassiane, caught in chaos --- Debi wrote: > I seriously doubt you have read the medical history > of the entire > 5,000 cases in vaccine court. I happen to know at > least three of the > kids, mine being one of them. I can tell you for > certain that Allie's > lack of mito disorder is not from my trying to find > out if she has it. > The fact is there are few physicians in this country > that can get > their heads out of there <insert dirty word> enough > to even begin to > know how to diagnose such a case. Also, thimerosal > has been proven to > cause disruptions in mitochondrial function, as do > infections, aka, > vaccines. > > As to the other two cases, I don't have the right to > disclose their > personal medical issues, but to simply put it, you > are wrong regarding > vaccine court. Nor are the families I know or myself > " suing the > government for autism, " we're suing because our > children had adverse > reactions to vaccines, that ended up being autism. > That is what the > vaccine court is there for and I for one will not > feel guilty for > trying to seek financial assistance to care for my > child, especially > since the government was well aware by April 2000 > that there was a > chance of my child being significantly harmed from > vaccines and did > not inform me. It's far from " compensation " > considering my child has > to date been permanently injured, but it will > hopefully ensure she > won't be locked away at some place to be gang raped > the rest of her life. > > As to Hannah, I've not seen any disclosures of her > specific disorder, > could you link to where ever her medical history is > posted? > > Debi, who hopefully will get her possible mito > issues diagnosed when > Dr. Geier takes a look at her > > - > > ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 I've read quite a bit Debi. I also know at least one person is there just for money. I ALSO know the Polings (who's story has been talked about on 1000000 blogs, which you don't " approve " of, but I don't approve of Stagliano or Kirby so we can call it even) conveniently downplayed mom's dx of the same disorder-which I am not going over inheritence for because it's easy enough to look up-and could have had GREEN MITO PINS instead of puzzle peice buttionaires. I think the way families with disabled kids, and the way disabled adults, are treated in this country sucks. I don't think people should NEED to sue to see to it that their kids' needs are taken care of. I know that many parents are genuine. I am idealistic that far. I am not, however, idealistic/naive enough to think that having an autistic child makes anyone a saint. I've met MY parents. Kassiane --- Debi wrote: > Kassi, you've not met every family of those in > vaccine court. You > don't know who they are or what their health issues > are. It so happens > that my daughter has been less healthy, hospitalized > numerous times, > and has had CLEAN genetic testing. Nothing. Zilch. > It's also dangerous > to assume anyone in vaccine court is there with > " just autistic " kids. > It's also very unfair to have a sick child who was > never sick until a > hep b vaccine at nine months of age and to watch her > be so sick all > she can do is pound her fists while she vomits as I > rush her to the > hospital, yet again. You make assumptions about a > group of people that > just is not accurate or fair. > > Debi > > - > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Hi Kassi, This is my first time to post, I have been following this list serv for a couple of months. My just turned 4 year old daughter is on the Spectrum. I have to say, with all due respect, that I have a hard time reading your posts as they are so full of anger and sarcasm. We are all angry and mad that this has happened to our family, but you might find a more willing audience if you were to take a deep breath and understand that we are all in our own way on the same journey. Just my own opinion. CK > I don't need to read ALL of them, though if you have > them handy I'm hyperlexic. Honestly, 5,000 mito kids > would be a lot harder to miss than 5,000 autistic > kids. Seriously. > > Allie, from your description, is one of the kids I can > actually see having a metabolic issue. And I have no > reason not to trust your description of her. But Allie > isn't standard issue autism. Does that make sense? > > Kassiane, caught in chaos > > --- Debi wrote: > > > I seriously doubt you have read the medical history > > of the entire > > 5,000 cases in vaccine court. I happen to know at > > least three of the > > kids, mine being one of them. I can tell you for > > certain that Allie's > > lack of mito disorder is not from my trying to find > > out if she has it. > > The fact is there are few physicians in this country > > that can get > > their heads out of there <insert dirty word> enough > > to even begin to > > know how to diagnose such a case. Also, thimerosal > > has been proven to > > cause disruptions in mitochondrial function, as do > > infections, aka, > > vaccines. > > > > As to the other two cases, I don't have the right to > > disclose their > > personal medical issues, but to simply put it, you > > are wrong regarding > > vaccine court. Nor are the families I know or myself > > " suing the > > government for autism, " we're suing because our > > children had adverse > > reactions to vaccines, that ended up being autism. > > That is what the > > vaccine court is there for and I for one will not > > feel guilty for > > trying to seek financial assistance to care for my > > child, especially > > since the government was well aware by April 2000 > > that there was a > > chance of my child being significantly harmed from > > vaccines and did > > not inform me. It's far from " compensation " > > considering my child has > > to date been permanently injured, but it will > > hopefully ensure she > > won't be locked away at some place to be gang raped > > the rest of her life. > > > > As to Hannah, I've not seen any disclosures of her > > specific disorder, > > could you link to where ever her medical history is > > posted? > > > > Debi, who hopefully will get her possible mito > > issues diagnosed when > > Dr. Geier takes a look at her > > > > - > > > > > > __________________________________________________________ > Looking for last minute shopping deals? > Find them fast with Yahoo! Search.http://tools.search.yahoo.com/ > newsearch/category.php?category=shopping > > Quote Link to comment Share on other sites More sharing options...
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