Age of Autism Comment of the Week
Cave Walls

You Can Run But You Can't Hide

Mother atlas By Cathy Jameson 

The blame game. We all play it. We all think it. We all know we can’t use it for the majority of life’s ills, but we still try it anyway.  Life isn’t planned in a neat little calendar but we wish it was. Events interrupt us and prevent us from fulfilling our wants and dreams. Sick days happen, vacations get shortened, jobs aren’t what we hoped they would be and we feel crushed. 

As our families grow and kids become a higher priority than our own lives, some may wonder if this is what parenting was always about.  Did I know this when I signed up to be married, to have and to hold new babies, to clean up sicknesses puked down my shirt, to watch health being stolen away by a sharp and shiny needle jabbed under my newborn’s skin, to be sure that death was looming over my son not once, but a full handful of time in his short life?  I know I didn’t want to willingly give up immature thoughts of ‘what could have been’ as I pictured future healthy pink- and blue-outfitted children, but when I embarked this journey that includes vaccine injury, I had to quickly change those thoughts. I had to pull up my sleeves, get my Mommy dukes up and fight like hell to have faith, to hold a sensory-defensive irate child, to battle sicknesses, to celebrate health and to pray that death, if it ever came that close again, to be swift and painless for no parent wants to witness the utter agony that befalls their ill children.

We’ve fought for our son Ronan for years now. I feel like I am a professional researcher and medical something or other.  It’s only now, in the last few weeks, that we have had a clearer picture about Ronan’s medical future.  Some days I want to yell, “I told you so!” to former doctors we used to see. Before we got the results of my son’s diagnosis, I actually uttered these words to my husband, “Honey, what if Ronan were switched at birth?  I don’t mean an alien switch, but the nursery-in-the-hospital switch like you read about every few years.  What if Ronan belongs to another family and they have our kid who is healthy and we have their kid?!”  I immediately felt a stab of guilt thinking that we may be relieved of the pain it brings to raise a child like Ronan if he wasn’t our child.  I felt sorry for letting down my ever-present glimmer of hope for my son—he’s so innocent despite the new sneakiness he thinks he has as he scrambles away from the kitchen with my waffle in his mouth.  He’s so pure in thought and action and his face is so beautiful, made in such an image of peace and love.  That silly notion of ‘switched at birth’ goes right out the window since Ronan looks a lot like my entire side of the family!

I quickly took back the words I spoke thinking that if Ronan did belong to another family they would never take care of him like we do. They would never fight the system that failed him years ago. They would never understand the needs Ronan has since we have worked so hard to do just that. We finally made a break-through with Ronan’s communication after years of struggling.  How can I give him up that easily in a conversation I was hoping to make me feel better?  Waiting for Ronan’s diagnosis had us on pins and needles, ha, not like vaccine needles thankfully, but with such anticipation that my thoughts were clouded.  When the diagnosis came, I felt the brunt of the blame game.

Almost four years ago, we asked a doctor to perform a test. He belittled us, refused to help us and left us shaking our heads in disbelief. We lost all faith in anything related to doctors.  Due to this man’s rudeness, other doctors were less than approachable. We wandered aimlessly in the medical field begging for someone to listen to us, to let us validate what we knew happened to our son and to guide us in healing his broken body.  Four years after spending thousands of dollars (thousands!!!), we found a team that would listen.  That simple test we wanted done within months of seeing Ronan decline, was done. It only took 6 weeks to get the results and insurance covered most of it.  That test proved that Ronan had something more than this thing called autism, that thing I loathe, that thing that has no place in our world at alarming statistics such as today’s rate of 1 in 150 (which are really much worse as that info was old when it was published).  The test results bring more unanswered questions, but at least we have a starting point.  It almost explains ‘the everything’ that is our child and that happened to our child. Ronan has a mitochondrial disease and guess what? You can blame me.

We used to blame my husband since he’s got some wonky stuff going on in his family’s past. He and Ronan share a chromosomal thingy too.   Since I had already assumed Steve was the one to blame, it took me by surprise that Ronan’s *maternally* inherited mitochondrial disease could only come from his mother: me!  Poor Ronan to inherit this just by being my son! He had so much against him and then to introduce vaccines into his fragile body which I insisted on getting oh-so timely during his early stages of development; no wonder he crashed so quickly!  Add arriving to his birth early and then oftentimes sick while getting those vaccines probably didn’t help matters either.  The “autistic tendencies,” as well as the long list of medical problems, now make sense. We have started a new path to hopefully find treatment and therapy that will work for Ronan.

Ronan doesn’t know he has this disease. He doesn’t know that what he does is inappropriate. He doesn’t figure things out as quickly as our typical children do. Ronan takes his time to evolve into our world, into our routine and into our family. He works so hard to get the simplest tasks done so we celebrate these uncommon milestones with enormous praise and hope. Ronan finds ways to entertain us without realizing we are beaming from ear to ear.  Ronan makes us hope for more. 

Lately, Ronan has found comfort in sleeping on the folded futon mattress in his bedroom. We have a big boy bed with cozy blankets and Doggy Dog ready for Ronan each night. He gets all tucked in by Daddy into his bed but then, right before we turn out our lights, we find Ronan asleep under the futon cover. It’s a thin sheet but long enough to cover a sweet five-year old boy.  He sleeps all curled up, arms and legs tucked up, booty in the air, breathing softly and hopefully dreaming sweet dreams. He looks like he’s playing hide and seek like our two-year old does. She covers her eyes and thinks she’s invisible. Ronan has always loved a good game of us hiding from him and popping out from around the corner. He bellows a loud and gleeful laugh. I wonder if in the night, Ronan is still trying to engage us, thinking, maybe if I hide under here for a few minutes, Dad will come in, find me and snuggle with me again.

I wonder if Ronan will ever know that we weep softly while untucking his warm body to place him back in his own bed. I wonder if Ronan understands that no one was meant to care for him except us, this family that has embraced him, all of him.  His health has run awry while our expectations hide behind reality.  Despite the negative that keeps stacking up against us, we keep running toward a glimmer of light. We see it when we look into Ronan’s eyes—you can’t hide from his intense gaze full of hope.

--
Cathy Jameson is the mother of five. She and her husband hope for more answers as they turn a different road on Ronan’s medical map of life. They are searching for specific research about mitochondrial disease and vaccine injury since they know there is a link with the two.

Comments

Benedetta Stilwell

Ann Benson;
Not all trouble with mitochondria is inherited! My thinking is the poison (vaccine) has super energizited a part of the immune system and some how have clogged the workings of this energy producer.

It would not have stopped working or slowed it down if not for the vaccines.

Ann Benson

Why all of a sudden is mitocondria disorder so prevalent? This inherited disease causes autism? That is a lie!
The cause of autism is vaccine filled with virus and toxins that destroy the nervous system to various degree.
I was a teacher for 35 years and when I first started teaching no one ever heard of autism and as vaccines became more prolific and more vaccines were added to the schedule, autism reared its ugly head and so did ADHD and asthma. All the teachers were perplexed and we were told that the 'cold mothers' were the reason for autism.
To be a classroom teacher nowadays is beyond difficult, it is impossible.

Benedetta Stilwell

Well I am sorry Cathy, I see it really is the mother mitochondria. Oh that is hard, and I am sorry I was not more sensitive. Good luck, God bless, and I will give a quick prayer every day for you and Ronan.

Cathy Jameson

One site I like to use as a reference is www.mitoaction.org. There's always the UMDF site which has more medical links (as in the testing we and other families have done).

Twyla--thank you for posting the links. I was traveling all day yesterday and didn't get a chance to hop online to respond to some of the comments I had read in the morning. I think between Libby's first post and your links other readers have a place to start searching for information. Maria added more of to the scientific pool of articles to check out too.

Chris--I think you commented on my story "The Others" a couple months ago, right? It is interesting to know other large families like mine exist too. Many people wonder if we knew of Ronan's issues AND continued to have more children. The answer would have to be yes and no as we, to this day, are still working on finding out more of what is going on with Ronan. We have more major appointments next month with specialists and will of course ask tons more questions.

Benedetta Stilwell

Thanks Twyla for giving me the links to previous articles. I had read two of them much earlier, but not Blaylock's and oh he is right ---!

I knew all this deep down inside since 1987 and testing for low l-carnitine since 1992. Do you know how horrible it is to know something so profound that should be shouted to the world and yet your so small, the shout is just a whisper! I guess you do.

Go for the glimmer

Thank you so much for this. You have some of the clearest thoughts I've read on the "existentials" of dealing with these injuries-- the ones to our children and the ones to us as parents.

You bring up so many important things. I've wondered about that mito inheritance issue too and who contributed what. A few people here bring up important points about how complex the subject is. David Kirby quoted some unnamed scientists on a CDC committee who discussed that one type of mito "fragility" can come from dad and is associated with high IQ and susceptibility to vaccines. My husband and I discuss it without any sense of shame because we know full well that, without the addition of massive toxic assaults to our kids, any wobbley genes in either of our backgrounds might have never manifested as anything negative at all beyond a tendency to get indigestion or, say, headaches. Maybe my husband's mitochondrial "wobble" was an evolutionary trade-off for his beautiful singing voice and facility with abstract thinking. Maybe my evolutionary trade-off was my ability to render anything in 3-D (though I sort of think nature should have accepted my inability to make change and weak knees as a fair trade).

And who knows if all mito disorders are necessarily inherited at all and whether the inherited portion played that big a role. John Poling made it clear that he wasn't really convinced that the mito fragility shared by Hannah and his wife was the real culprit and that some of the mito markers Hannah displayed could have been simply induced after birth. Kind of like if a kid is born with the most minor spina bifida and then gets a broken back from being dropped on the tile floor at the ped's during a well-baby visit, which is then chalked up to spina bifida. Did the spina bifida make their back more easy to break? Maybe, maybe not: but the *tile*-- and being dropped on it-- made it easier still. I think Dr. Poling's point is that it's not so fully understood that simple conclusions can be drawn. I wish I could find that quote of his.

I don't think the "what could have been" is an immature thought or even a futile one. I'm with you on following the glimmer. I figure the "could have beens" are how we maintain compassion towards other parents who might be poised on the brink of disaster themselves and think "Why should they suffer too?"-- because we WERE them and their child-to-be COULD HAVE BEEN our child. Warning them is the same as the impulse to grab a child whose fingers are too close to the closing subway doors. Also, remembering what could have been is a way of holding on to what can yet be. Evan McCarthy's "could have been" is now his "is" in some very significant ways.

But it's painful to sustain that hope because of the risk of not achieving it, sometimes easier to let go of it, even if that would lead to dropping the ball in ways that might reduce by degrees our kids' chances of recovery. We all know the parents who never nurtured the "glimmer" and scoff at "the diet", grab onto the "genes only" theory to shield themselves from "dangerous hope", as Offit coaches parents to do.

For that reason, I think it's admirable that you don't play it safe for yourself emotionally-- all so that your son may be safer.

Benedetta Stilwell

But if it is not mitochondria inherited from the Mom and one of the other three types, then what comes first the chicken or the egg? That is- is the inflammation/ischemia causing the mitochondrial dysfunction or is the mitochonddrial diysfunction causing inflammation/ischemia?

Mom2JettandJude

Cathy,
I'm assuming you have had the genetic tests to prove that your son's mutation is maternally inherited?

"DIAGNOSED mitochondrial disorder which, by definition, is inherited maternally."

I can tell by the above comment that readers don't all realize that maternally inherited mitochondrial disorders only account for approx. 30% of mitochondrial disease.

In fact, it's usually difficult to say whether or not "new" mutations are pathogenic. In addition, there are tests that haven't even been developed yet.

If one parent has a known mutation, there's nothing to say that the other parent doesn't have some other mutation that has not been discovered yet. There are also many other factors like polymorphisms.

And sometimes, even though a mutation is maternally inherited, it may not necessarily be considered maternal inheritance. It might be autosomal dominant and the mother happens to be the one who carries it.

I'm not saying your child's mutation is not maternally inherited, but for the readers out there, the genetics of mitochondrial disease is very complex indeed.

Benedetta Stilwell

We found my husband's cousin out in the middle of nowhere in a white out blizzard, in the worst winter we ever had in 1979. He had been missing for a month, and his father was worried about his son who had made very high on his ACT, top of his class at a prestigous college, no problem ever son. Cousin claimed he had worked for the CIA, now somebody was after him, and he needed to hide! HE was 25 years old!

María Luján Ferreira

Hi
Really I am very interested in the scientific published research on these topics and also in all the aspects -emotional and sociological presented in AoA for a full discussion. Glad you consider my post interesting.There are plenty of reports- I prefer to call them clues for now- about how autistic children may have an unique group of susceptibilities to different co exposures and it seems that researchers are so involved in the search for the GENES- and the behavioral/psycological approach- that forget the real needs and medical problems many autistic children have- like my son and from what I read many children of parents who post here and elsewhere.
Recent studies on schizophrenia and mitochondrial dysfunction:

Biol Psychiatry. 2009 Mar 15;65(6):489-94. Epub 2008 Dec 21. Links
Elevated cerebrospinal fluid lactate concentrations in patients with bipolar disorder and schizophrenia: implications for the mitochondrial dysfunction hypothesis.Regenold WT, Phatak P, Marano CM, Sassan A, Conley RR, Kling MA.
Division of Geriatric Psychiatry, Department of Psychiatry, University of Maryland School of Medicine, Baltimore, Maryland 21201, USA.
BACKGROUND: Evidence is accumulating that mitochondrial dysfunction is involved in the pathophysiology of bipolar disorder and schizophrenia. Cerebrospinal fluid (CSF) concentration of lactate, a product of extra-mitochondrial glucose metabolism, is commonly elevated in individuals with mitochondrial disorders, especially those with neuropsychiatric symptoms. We tested the hypothesis that patients with bipolar disorder and schizophrenia would, on average, have elevated CSF lactate concentrations compared with healthy control subjects. METHODS: The CSF lactate and CSF and plasma glucose concentrations were measured with a YSI (YSI, Yellow Springs, Ohio) 2300 STAT Plus Glucose & Lactate Analyzer in 15 samples from each of three groups of subjects: bipolar I disorder patients, schizophrenic patients, and healthy control subjects. RESULTS: Mean CSF lactate concentrations were significantly higher in bipolar (1.76 +/- .38) and schizophrenic subjects (1.61 +/- .31) compared with control subjects (1.31 +/- .21 mmol/L). These differences persisted after adjusting means for CSF glucose concentration, which correlated positively with CSF lactate concentration. CONCLUSIONS: This is the first report of increased CSF lactate concentrations in patients with bipolar disorder and schizophrenia. Elevated CSF lactate indicates increased extra-mitochondrial and anaerobic glucose metabolism and is consistent with impaired mitochondrial metabolism. Measuring CSF lactate concentration might help identify bipolar and schizophrenic patients with mitochondrial dysfunction who might benefit from research to elucidate and ultimately rectify possible mitochondrial pathology underlying these disorders.

Neurochem Res. 2009 Jun;34(6):1021-9. Epub 2008 Nov 1. Links
Mitochondrial dysfunction and psychiatric disorders.Rezin GT, Amboni G, Zugno AI, Quevedo J, Streck EL.
Laboratório de Fisiopatologia Experimental, Programa de Pós-graduação em Ciências da Saúde, Universidade do Extremo Sul Catarinense, Criciuma, SC, Brazil.

Mitochondrial oxidative phosphorylation is the major ATP-producing pathway, which supplies more than 95% of the total energy requirement in the cells. Damage to the mitochondrial electron transport chain has been suggested to be an important factor in the pathogenesis of a range of psychiatric disorders. Tissues with high energy demands, such as the brain, contain a large number of mitochondria, being therefore more susceptible to reduction of the aerobic metabolism. Mitochondrial dysfunction results from alterations in biochemical cascade and the damage to the mitochondrial electron transport chain has been suggested to be an important factor in the pathogenesis of a range of neuropsychiatric disorders, such as bipolar disorder, depression and schizophrenia. Bipolar disorder is a prevalent psychiatric disorder characterized by alternating episodes of mania and depression. Recent studies have demonstrated that important enzymes involved in brain energy are altered in bipolar disorder patients and after amphetamine administration, an animal model of mania. Depressive disorders, including major depression, are serious and disabling. However, the exact pathophysiology of depression is not clearly understood. Several works have demonstrated that metabolism is impaired in some animal models of depression, induced by chronic stress, especially the activities of the complexes of mitochondrial respiratory chain. Schizophrenia is a devastating mental disorder characterized by disturbed thoughts and perception, alongside cognitive and emotional decline associated with a severe reduction in occupational and social functioning, and in coping abilities. Alterations of mitochondrial oxidative phosphorylation in schizophrenia have been reported in several brain regions and also in platelets. Abnormal mitochondrial morphology, size and density have all been reported in the brains of schizophrenic individuals. Considering that several studies link energy impairment to neuronal death, neurodegeneration and disease, this review article discusses energy impairment as a mechanism underlying the pathophysiology of some psychiatric disorders, like bipolar disorder, depression and schizophrenia.

Now, here these recent reports talk about mitochondria abnormalities in the oxidative phosphorilation
and the conclusion of the former report from autistic children was
Impaired mitochondrial fatty acid oxidation, elevated plasma VLCFAs, and glutamate toxicity as putative causal factors in the biochemistry, neuropathology, and gender bias in autism are discussed.

It seems really a field to consider properly such as it is the immune system in autism.

Benedetta Stilwell

Maria always get a lot out of your blogs. This one included. Four types of mitro and really any disease may start here! It can be reversed here too, as far as I am concerned!
I found very interesting the stuff you wrote about schizos in young adults may be the same thing we are seeing in the regression into autism of young children.

María Luján Ferreira

And
Prostaglandins Leukot Essent Fatty Acids. 2009
Novel plasma phospholipid biomarkers of autism: Mitochondrial dysfunction as a putative causative mechanism.Pastural E, Ritchie S, Lu Y, Jin W, Kavianpour A, Khine Su-Myat K, Heath D, Wood PL, Fisk M, Goodenowe DB.
Phenomenome Discoveries Inc., 204-407 Downey Road, Saskatoon, Saskatchewan, Canada S7N 4L8.

Autism is a neurological disorder that manifests as noticeable behavioral and developmental abnormalities predominantly in males between the ages of 2 and 10. Although the genetics, biochemistry and neuropathology of this disease have been extensively studied, underlying causal factors to this disease have remained elusive. Using a longitudinal trial design in which three plasma samples were collected from 15 autistic and 12 non-autistic age-matched controls over the course of 1 year, universal and unambiguous alterations in lipid metabolism were observed. Biomarkers of fatty acid elongation and desaturation (poly-unsaturated long chain fatty acids (PUFA) and/or saturated very long chain fatty acids (VLCFA)-containing ethanolamine phospholipids) were statistically elevated in all autistic subjects. In all 8 of the affected/non-affected sibling pairs, the affected sibling had higher levels of these biomarkers than the unaffected sibling. Exposure of neurons, astrocytes and hepatocytes in vitro to elevated extracellular glutamate levels resulted in lipid biomarker changes indistinguishable from those observed in autistic subjects. Glutamate stress also resulted in in vitro decreased levels of reduced glutathione (GSH), methionine and cysteine, in a similar way to the decreases we observed in autism plasma. Impaired mitochondrial fatty acid oxidation, elevated plasma VLCFAs, and glutamate toxicity as putative causal factors in the biochemistry, neuropathology, and gender bias in autism are discussed.

María Luján Ferreira

Hi
This very recent manuscript is very interesting- even when very scientific in language-Its an open-access article
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=19564950
From the manuscript posted above

"Indeed, four large groups of diseases with mitochondrial impairments can be distinguished: 1) primary mitochondrial diseases caused by hereditary or acquired mutations within the mitochondrial genome, 2) secondary mitochondrial diseases which are provoked by mutations in the non-mitochondrial genome leading to mitochondriotoxic effects by mutated proteins or crucially altered regulatory processes, 3) acute mitochondrial insults due to ischemia, inflammation, and intoxications, and 4) changes of mitochondrial regulation and function in cancer cells. In any case,
impaired mitochondrial function leads to cellular energetic depression which is characterized by diminished phosphorylation potentials, cytoplasmic and mitochondrial Ca2+ overload, and accumulation of ROS and toxic proteins".

The 3) is particularly interesting....
Int J Mol Sci. 2009 May 19;10(5):2252-303. Links
Mitochondria and energetic depression in cell pathophysiology.Seppet E, Gruno M, Peetsalu A, Gizatullina Z, Nguyen HP, Vielhaber S, Wussling MH, Trumbeckaite S, Arandarcikaite O, Jerzembeck D, Sonnabend M, Jegorov K, Zierz S, Striggow F, Gellerich FN.
Mitochondrial dysfunction is a hallmark of almost all diseases. Acquired or inherited mutations of the mitochondrial genome DNA may give rise to mitochondrial diseases. Another class of disorders, in which mitochondrial impairments are initiated by extramitochondrial factors, includes neurodegenerative diseases and syndromes resulting from typical pathological processes, such as hypoxia/ischemia, inflammation, intoxications, and carcinogenesis. Both classes of diseases lead to cellular energetic depression (CED), which is characterized by decreased cytosolic phosphorylation potential that suppresses the cell's ability to do work and control the intracellular Ca(2+) homeostasis and its redox state. If progressing, CED leads to cell death, whose type is linked to the functional status of the mitochondria. In the case of limited deterioration, when some amounts of ATP can still be generated due to oxidative phosphorylation (OXPHOS), mitochondria launch the apoptotic cell death program by release of cytochrome c. Following pronounced CED, cytoplasmic ATP levels fall below the thresholds required for processing the ATP-dependent apoptotic cascade and the cell dies from necrosis. Both types of death can be grouped together as a mitochondrial cell death (MCD). However, there exist multiple adaptive reactions aimed at protecting cells against CED. In this context, a metabolic shift characterized by suppression of OXPHOS combined with activation of aerobic glycolysis as the main pathway for ATP synthesis (Warburg effect) is of central importance. Whereas this type of adaptation is sufficiently effective to avoid CED and to control the cellular redox state, thereby ensuring the cell survival, it also favors the avoidance of apoptotic cell death. This scenario may underlie uncontrolled cellular proliferation and growth, eventually resulting in carcinogenesis.

Chris

Cathy, I have five kids, too!

I didn't know there were other autism moms out there with larger families like we have.

How do you go about testing for mito disease, BTW? Nat has had low muscle tone ever since we can remember and someone suggested to me that she may have a mitochondrial disorder.

cynical

Paul,

Perhaps I've been on the computer too long today, but your post has confused me.

[[[but then go on to unequivocally blame your son's vaccinations for all his ills? Really???]]]

Please direct me to this, I've read her piece twice now, and don't know what you're talking about.

[[[Anecdotes from "a mother's intuition" may stand up in the forum here on Age of Autism, but it has little place in the court of scientific process.]]]

Lost me again. Are you saying she's not allowed to talk about her son's mito disease? How is it intuition when it is a confirmed diagnosis? Is there some "court" case pending regarding her son's condition and an association with vaccine damage or something?

Pretending to be sympathetic and scientifically arrogant at the same time seems to be a common characteristic these days.

Roger Kulp

"I feel like I am a professional researcher and medical something or other."

Like they say welcome to my world.Imagine for a minute what it has been like to be the person who has both autism,and all this medical crap,and having to wait until you were an adult to try and find out what is wrong all by yourself.

It was a major coup,a couple of years ago, when my doctors (plural) mindset switched from one of "Well we know you have autism, autism is a mental disease,you have all these weird medical problems we can't figure out,and since you're mentally ill (sic),it must be somatization or Munchhausen"

To one of

"Okay okay you really are sick,but we can't figure out what it is.As far as these problems go you're on your own,good luck".

I ended up being a medical orphan.I was hoping to go to either Cleveland or Mass General for an evaluation,but there is no way I will be able to get a new primary physician.It's almost like I was blacklisted. I have heard that hospitals keep a secret lists of patients that they feel are "troublemakers",and tell other doctors not to see them either.

So no mito evaluation for me,but maybe it wasn't meant to be.

Only in the past few days,have I found someone who is probably one of the top two or three DAN! doctors in the world,and I will probably be seeing him instead.He would be my primary,even if he lives 2000 miles away.

I too,thought my autism might be 100% mitochondrial,but after over a year of being in not one,but two,online discussion groups of parents whose children have both autism and mitochondrial disease,I see major differences.I don't have weakness,I have lack of muscle development.I have far too many issues with chronic infection,and my immune symptoms are too severe,as is my hypermetabolism,even for mito.(Yes that's right hypermetabolism AND bowel disease with autism.)My cerebrovacular symptoms and "electrical storms" are nothing like classic stroke like episodes,but ARE like the "post inflammatory glial syndrome" Dr.Martha Herbert has described.

The DAN! doctor I hope to see told me that he thinks it is very likely,I have a mix of immune,mitochondrail,and nonmitochondial metabolic disorders going on here,which is a theory I see popping up more and more these days.

As I say here over and over again.Autism has many different causes.Mitochondrial disease may be it for some people,but not for everybody.If that's what causes it in your family,that's great,you found the cause,but for the rest of it,we just move on to the next possible lead.

Mimi

Cat, beautifully written as always. I don't know how you find the time but glad that you do.

Twyla

Paul -
There is plenty of science out there linking vaccines and mitochondrial disorder, mercury and mitochondrial disorder, mitochondrial disorder and autism, etc. Cathy's article is not a scientific paper and does not pretend to be. There is nothing flawed about Cathy's logic. She is writing about her experiences. A paper on the scientific links between vaccines, mitochondrial disorder, and autism will be for another day.

For more info on mito, vaccines, & autism see http://www.ageofautism.com/2008/05/david-kirby-fev.html
and
http://www.ageofautism.com/2008/04/dr-blaylock-on.html
and
http://www.huffingtonpost.com/david-kirby/new-study---mitochondrial_b_147030.html
and
http://www.ageofautism.com/2009/05/david-kirbys-autism-one-presentation-metals-myelin-mitochondria-pathways-to-autism.html
just for starters...

Benedetta Stilwell

My husband has a dignosis of mitochondria and it is not I repeat NOT NOT NOT inherited. Yes the mitochondria does come form the mother, it is a well known fact that is pounded into biology students. But environmental things like poisons and toxins and autoimmune disorders can interupt the working of the mitochondria too. Immune reponses that mess up the Krebs cycle can come for the father or mother or both!

My husband is dignosed with mitochondria disorder ----environmental induced. There are specific test, to see if it is the mother's mitochondria. Did the docs perform that test or did you or the doc think Oh, mitochondria = mother?

Paul

Cathy, I grieve for you and your son's diagnoses.

By your own report, your son has a confirmed, DIAGNOSED mitochondrial disorder which, by definition, is inherited maternally. I agree with Libby that there is no BLAME, however, this is not your FAULT, unless you willingly and maliciously conceived in order to produce a child with a genetic disorder, which you obviously didn't-- it's clear you're a loving mother.

However, can you not see the clear flaws in your logic? You describe for us your son's behavioral difficulties in the context of this confirmed genetic disorder that affects every cell in his body, as well as an ill-defined list of symptoms that you further soften by calling them "autistic TENDENCIES", but then go on to unequivocally blame your son's vaccinations for all his ills? Really??? What specific mitochondrial disorder does he have? How many of your other four children have a mitochondrial disorder? How many of your other four children were vaccinated? How many of them have these behavioral issues? What are the chances that Ronan's behavioral concerns are due to... his mitochondrial disorder alone?

I truly wish you and your family the best, and hope Ronan has or finds a great geneticist and supportive therapies in your area. However, your report here is ripe with justified emotion but misplaced blame, and severely lacking in specific details, objective thought process and evidence to support your sweeping claims. Anecdotes from "a mother's intuition" may stand up in the forum here on Age of Autism, but it has little place in the court of scientific process.

Paul

Jeanne

Ah Cathy, why you gotta be makin' me cry so early on a Sunday morning?

What a beautifully written, and poignant piece. I am going to share it with everyone I know.

Libby

Cathy -

Before you blame yourself, did you have the genetic mito test run on yourself? There is new data coming out (maybe David Kirby wrote about it?) that there is a paternal side to mito as well.

There is also 'acquired' mito - which means it wasn't there at birth.

There is also reversal of mitochondrial disorder - like we are seeing in my daughter. She was diagnosed at 2 yo with mito via biopsy and numerous blood workups. After years of biomed (she turned 8 yesterday), her mito markers are all within normal limits. Her muscles are strong and her health is much improved. We haven't repeated the biopsy yet.

If you search TOXNET for mitochondrial dysfunction and heavy metals, the list of studies is long. Most of these researchers have nothing to do with autism.

Good luck in your search and work for Ronan.


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