tag:blogger.com,1999:blog-33596809.post8834730175041565846..comments2024-01-01T00:52:44.278-08:00Comments on Stop. Think. Autism.: This Whole Mito Thing (My Final Vent...Hopefully!)S.L.http://www.blogger.com/profile/07862458535714883672noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-33596809.post-3209908992602604152009-02-23T17:50:00.000-08:002009-02-23T17:50:00.000-08:00I have a child with mito that is J tube fed and ha...I have a child with mito that is J tube fed and has complicated problems. However, he not only walks, but runs. He's (knock on some serious wood), never had a seizure. He however does have PDD-NOS and is believed to likely be diagnosed Asperger's in the future as he matures. Every mito family I've found so far seems to be on the spectrum somewhere. <BR/><BR/>I don't think vaccines contributed to our case, but certainly there are others that have clear correlations and I don't think there have been enough studies to know what is going on yet. <BR/><BR/>There is a study about to happen in Boston where they look at Mito/Vaccinations.<BR/><BR/>I don't think enough is known about either disease at this point.<BR/><BR/>One thing that I had a serious problem with about your article was you don't clearly represent mitochondrial disease. 1 in 200 people carry the mitochondrial mutation and it is believed that at least 1 in 5000 experience symptoms. Like Autism, the spectrum can be so large that you may only have a few subtle symptoms or you may be so severely affected that you pass. But there are many mito kids that are yet to be diagnosed that are misdiagnosed. There are many that are being effectively managed and live semi-normal lives. There are people who don't even show symptoms until they are in their adulthood. <BR/><BR/>You are not a medical professional and you should not be giving any type of medical advice in a blog.<BR/><BR/>If a parent has a gut feeling about their child, they should go and have that explored. No medical professional is going to do a mitochondrial workup without just cause. So, feel certain that if a physician feels a muscle biopsy is necessary, then who are we to question that.<BR/><BR/>But lastly, one thing I do know is that no matter how sick my child is, it can always be worse. You have no clue what the people are living and I know some autistic only children who have their own problems that to me are far more severe than ours and my child is also tube fed. But, Noah can have conversations with us. He can feed himself. He can tell me he's hungry even if he can't digest it. He can tell me his stomach hurts. He has mito! He is more functional than some 16 year olds with severe autism I know. <BR/><BR/>I'm not trying to bash you or make you feel bad, but I want you to accurately depict something and when I read your article it sounded like there was no way we could possibly have mito because my child can walk, doesn't have seizures and hopefully is going to live a long life!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33596809.post-28721572544829821932008-06-04T14:04:00.000-07:002008-06-04T14:04:00.000-07:00This is an excellent post. I worry constantly abo...This is an excellent post. I worry constantly about when my son gets a cold, and we've been lucky that he hasn't been very sick over the last 2 years. Granted he's been through the normal childhood illnesses. It was however, before we noticed his regression at 22 months, that he had most of these. Everything from RSV to Chickenpox within the 1st 4 months and at least 4 (could be more, i lost count) ear infections before age 1. RSV a second time between 12 and 15 months, and 2 more ear infections before 2. I can only imagine that without his vaccines how much worse it could have been. I do think that his MMR vacine had some contributing factor to his regression, but what exactly I don't know. It could be just pure coincidence, since my daughter is perfectly healthy at age 3. Either way, no matter what it is, I would never tell someone to not vaccinate their children. I do however, think that there should be a change to the vaccine schedule, or doseage based on size and age of children.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33596809.post-1000970427779849942008-04-22T12:43:00.000-07:002008-04-22T12:43:00.000-07:00Response from Anon AboveI don't have a blog, so wh...Response from Anon Above<BR/><BR/>I don't have a blog, so why would I post a name? You can read whatever you like into the fact that I have no choice but to post here anonymously, but in fact the reason why I am doing so is because I do not have a Google/Blogger account. What difference does it make anyway?<BR/><BR/>You are most correct I have not read your entire blog, and that I have no strong desire to do so, but I will quote from this article (which I did read).<BR/><BR/>"Hope beyond hope that your child does NOT have it. If your child has never been hospitalized, has never had surgery, is able to walk, doesn't need a tube in order to receive nutrition, be grateful."<BR/><BR/>First, the subtle mito dysfunction being studied right now as a possible cause of some types of ASD doesn't result in surgery and hospitalization. If it did, then it wouldn't be subtle and clinically un-recognizeable without specialized testing. What you are describing above is an already recognized disease that (God bless and rest the child's soul) a young angel that you know suffered and died from. Therefore, it isn't exactly correct to tell parents that if their child has a condition like Hannah Polling that they should be deathly afraid.<BR/><BR/>Second, especially in subtle dysfunction, there is hope for interventions and treatments, especially nutritional interventions. For example, co Q10 enzyme and carnitine supplementation could potentially dramatically affect mild dysfunction. Again, these statements are made on the basis of emerging research/medical hypotheses.<BR/><BR/>Third, while I did not even address this in my post, I do take issue with your statement that there is zero evidence that vaccines alter mitochondria. Perhaps not published research. However, Hannah Polling's father has stated in the press that John Hopkins is proposing that there is a real, first cause connection between vaccines and mitochondria dysfunction. You are correct that the research is not published, but I have no reason to believe that Dr. Polling or John Hopkins have gone off the deep end. <BR/><BR/>My child is fully vaccinated. I do not have any reason to believe that her vaccines injured her or that they are unsafe. However, as research emerges, I will remain open to it, as should we all.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33596809.post-74822294722171104962008-04-21T14:34:00.000-07:002008-04-21T14:34:00.000-07:00l parker: I respect your thoughts & opinions, tha...<B>l parker:</B> I respect your thoughts & opinions, thank you for your comments. I do feel your last paragraph is something we should all think about. I do hope that the autism debate can get beyond its current point, and we can finally get proper services going for adult autistics, and all autistic individuals and their families.<BR/><BR/><B>"ANON"</B><BR/>It always strikes me at the tone and content of what an "anonymous" commenter will leave. Based on your attack and the assumptions you make, you have not taken the time to read my blog (or at least the ones devoted to mito). Furthermore, I do not respond to personal attacks, as I prefer to have civilized discussions and debates. Nearly your entire comment is a lie--your depiction of me, my writing, and how I come to my conclusions. If you had taken the time to read my blog entries on this, or the one from LB/RB, perhaps you would read the amount of studies I have looked into. My response to the whole "mito hysteria" came from the excitement of the anti-vaxers, who were thrilled to think their child had mitochondrial disease. There is zero evidence that vaccines alter mitochondria, likewise, the government has never admitted that vaccines cause autism or mitochondrial disorder. To this day, the recommendation for children who have mitochondrial disorder, is to get vaccinated. <BR/><BR/>There is a notable difference between mitochondrial dysfunction and mitochondrial disorder. Again, if you read my blog, this will become clear. It is not surprising that people with autism are found to have mitochondrial dysfunction. For example, if you were to look at a child with autism, one who also has hypotonia, motor delays, and mental retardation, a finding of mitochondrial dysfunction would not be surprising. In a child like that, it's obvious there is brain dysfunction and various stresses are occurring (hence, the change in mitochondrial dysfunction). I would go on further, but I have a feeling you would not take the time to attempt to understand, based on your fly-off-the-handle style comment.<BR/><BR/>Lastly, you claim this is my statement:<BR/><I>"mito is rare, nobody with autism has it"?</I><BR/>That is an out and out lie, and the accusation you make is disturbing. For one, I've pointed out that one of the symptoms of mito can be "autistic features," also autism/PDD can occur comorbid to mitochondrial disorder. Again, if you took the time to read my blog, you would have seen where I suggest (time and time again) genetic testing--including mito--if the case warrants it. If your child has autism, without any other physical manifestations, chances are you don't need genetic testing. However, if your child has autism along with other symptoms, seeking out a geneticist is beneficial. I've written about that very thing several times (you would also have read how our child was seen by a geneticist for a couple of years, tested and ruled out nearly everything under the sun--including mito). Please do not continue to twist and bend what you are reading, make false accusations, and lie about the statements I have made. And, at the very least, if you are going to do so, have the decency to leave your name/blogger i.d.S.L.https://www.blogger.com/profile/07862458535714883672noreply@blogger.comtag:blogger.com,1999:blog-33596809.post-83673777829570144432008-04-21T11:29:00.000-07:002008-04-21T11:29:00.000-07:00This is so UN-true. You are terribly confused abou...This is so UN-true. You are terribly confused about the implications of several peer-reviewed articles appearing in medical journals that implicate a link between mitochondria dysfunction and autism.<BR/><BR/>There is a DIFFERENCE between the clinically recognized in-born errors of metabolism that manifest in "mitochondrial disease", which may cause death in young children, and the subtle signs of dysautonomia which can be traced back to clinical markers of mitochondria dysfuction being found in ASD populations.<BR/><BR/>Have you even read the research, or do you just enjoy thinking you know and understand things that you don't, and telling everyone else how stupid they are?<BR/><BR/>In a 2008 study published in the American Journal of Biochemistry and Biotechnology entitled "Mitochondrial Deficient Endophenotype in Autism" the authors make this statement in the abtract, "This phenotype is similar, but more subtle than those seen in classic<BR/>mitochondrial defects." <BR/><BR/>So, in other words, you are terribly confused. You think that there is a 1:1 correlation between the mitochondrial disease your friend's children have and emerging research on subtle dysautonomia in autistic children linked to carnitine deficiencies.<BR/><BR/>Many PDD-NOS kids have dysautonomic symptoms. Kennedy Krieger is studying the mito/autism connection. I guess you don't know how to read medical journals? I don't have time to post all of the studies, so here's the Portugal study. This study was done in 2005 and posted in the journal of Developmental Medicine and Child Neurology.Volume 45, pages 185-189.<BR/><BR/>Bottom line, this is an emerging area of research. Nobody knows right now exactly what, if any, connection the described conditions have with vaccines. However, until we understand this emerging science, why don't you refrain from confusing people by claiming that "mito is rare, nobody with autism has it"?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33596809.post-73633386268129032482008-04-14T00:13:00.000-07:002008-04-14T00:13:00.000-07:00Sadly, many of us, with children struggling to sur...Sadly, many of us, with children struggling to surmount Autism, also find those same children struggling with encephalopathy, enteropathy, hypotonia, feeding disorder, diplopia or convergence disorder, bone pain, headaches, some level of mental retardation or severe learning difficulty, global developmental delay, sleep disorder, diaper dependence and much more.<BR/><BR/>When OUR children are ill, we have the exact same issues. Many of our children are chronically ill and susceptible to those DREAD diseases - and they are fully vaccinated (that is how they got to live their incredibly delightful lives). Funny how my fully vaccinated child has had pertussis, chicken pox, and measles.<BR/><BR/>I don't believe, for a second that the vaccine program, as it exists today, is safe or effective. Further, I believe it is a disservice to the public - lulling us into believing it does not matter what we feed our children (nutrition), whether we ensure sanitation through proper handwashing, or even recognize the need for home health care (I see far too many bottles of Dimetapp, DayQuil (sp), Sudaphed, Benedryl, Tylenol, and Ibuprofen left off for the teachers to dose kids during the school day). In our society, we take "medicine" to mask the symptoms of disease, instead of resolving the disease. This is a slippery slope, and, likely why we are such a sick populace.<BR/><BR/>Further, in the US, more people who contract the "dread" diseases are dying from them then before the implementation of the vaccine program. Mothers now pass on immunity for less time to their breastfed babies because vaccine immunity is lower than natural immunity. This leaves babies at-risk for getting diseases earlier - toddlerhood is when our immune systems are most able to properly respond to diseases. Now, vaccinated seniors are also susceptible to the "dread" diseases and their immunity is lower, as well. <BR/><BR/>If we had simply left nature alone, those of use with good nutrition, and proper handwashing on our side would have fared just fine anyway. The solution to fully vaccinated people contracting Mumps is NOT to add another vaccine booster for adults, it is to recognize the vaccine is ineffective and re-engineer a program that not only doesn't work, but is taking a massive toll in collateral damage. <BR/><BR/>I just trolled a copy of the VAERS. Do you know how many infants die of "SIDS" within 1 day of vaccination? Are you aware that "cot deaths" in Japan are now virtually non-existant since they stopped vaccinating before age 2?<BR/><BR/>Pat yourselves on the back and continue to believe you are so much better than the rest. The reality is that my daughter, and many others with "Autism," also happen to be mito kids; complete with ragged red fibers, lactic acidosis, seizures, hypotonia, vision problems, developmental delays, poor growth, liver and kidney issues, and GI disorders. <BR/><BR/>So, since we vaccinated, we aren't "anti-vax," and since we also happen to have mitochondrial dysfunction, we are YOU. <BR/><BR/>If we spent as much time bridge building as we do throwing stones, not only would the world be a more pleasant one, but we would probably have already solved this crisis and healed most of modern society's ills.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33596809.post-8501973489968098132008-04-02T15:05:00.000-07:002008-04-02T15:05:00.000-07:00My son’s doctor also diagnosed him with “static en...My son’s doctor also diagnosed him with “static encephalopathy”, but only because we needed a medical diagnosis in order to get services when he was younger and after his vaccines. Vaccines did not prevent the chicken pox or the flu, or reduce their severity, for either of my children and increased the number of hospitalizations for one child. My NT child was also hospitalized for RSV, pneumonia, and sinus surgeries due to vaccines. Prior to when my son was 10, the last time he vocalized was the week before his Dtap vaccine. He was sick for two weeks after that and had fevers during that time, but the doctor brushed us aside saying it was only “coincidental”. Now in hindsight, maybe in fact it was a “metabolic crisis”. The health of my children has only improved since we stopped vaccinating them.Chuckhttps://www.blogger.com/profile/01887737764037189119noreply@blogger.comtag:blogger.com,1999:blog-33596809.post-24211226229287640622008-02-29T05:53:00.000-08:002008-02-29T05:53:00.000-08:00Thanks for the perspective on this. I was about t...Thanks for the perspective on this. I was about the correlation Kirby put on mitochondrial 'markers' in autistics being 1000X more prevelent that the general population. I thought that he was using his 'google PhD' to put 3 and 3 and 3 together to get 27! I'd still like to see more on a potential subclass of autistics with these 'markers' to see if there is something that we're missing. But if you read the posts and released from the causation crowd, they have found THE cause. The tiny little piece that they are missing is that this little girl is suffering from a disease far far worse than autism could EVER be...LIVSPARENTShttps://www.blogger.com/profile/16992662086465958685noreply@blogger.comtag:blogger.com,1999:blog-33596809.post-88993356230379875702008-02-29T05:51:00.000-08:002008-02-29T05:51:00.000-08:00This is so true. It's unfair that some children ha...This is so true. It's unfair that some children have to deal with such difficult illnesses. I am grateful for the blind luck in having 3 healthy children. <BR/>It reminds me again of the quote on the Autism Speaks page from James Watson, "Autism is the worst thing that can happen to a family."<BR/><BR/>He should go meet a few families dealing with mitochondrial disease.Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-33596809.post-951719382180851972008-02-28T23:50:00.000-08:002008-02-28T23:50:00.000-08:00spectacular blogpost. thanks much.spectacular blogpost. thanks much.hollywoodjadedhttps://www.blogger.com/profile/04013967843734680828noreply@blogger.comtag:blogger.com,1999:blog-33596809.post-63684248721357046782008-02-28T23:06:00.000-08:002008-02-28T23:06:00.000-08:00I really appreciate this. I think it needs to get...I really appreciate this. I think it needs to get a wide readership. I think it's obvious that this is not some big victory for the antivax litigant parents otherwise their shark lawyers would be all over this, hauling their hundreds of clients with the same experiences as the little girl in the "conceded" case. She's very fortunate that she didn't catch the wild-type measles or something else that might have killed her. If she reacted badly to the chickenpox vaccine, imagine how she would have done with a case of wild-type chickenpox. And did she avoid getting the chickenpox earlier because her peers and neighbors had been vaccinated for chickenpox? Did she benefit from being in a vaccinated "herd" and does she still benefit from that?Jennyhttps://www.blogger.com/profile/08185261414126581318noreply@blogger.comtag:blogger.com,1999:blog-33596809.post-52386669346891942342008-02-28T20:25:00.000-08:002008-02-28T20:25:00.000-08:00Thanks for putting all this together-----leave it ...Thanks for putting all this together-----leave it to Kirby to keep making a mountain of accusations out of one specific case of one child!kristinahttps://www.blogger.com/profile/01104388229716638534noreply@blogger.com