Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

2/28/08

This Whole Mito Thing (My Final Vent...Hopefully!)

This began on AutismVox when comments began rolling in here over the supposed autism-vaccine case that the Government conceded on. Truth is, it was a mito-vaccine case, and people who feel vaccines caused their child's autism have no reason to celebrate over this. The government is not declaring that vaccines cause autism, or mito, or anything. While I disagree with the government's decision on this one, I also see how very different it is from the autism-vaccine cases. For one, this one could actually prove that vaccines MAY have done harm BECAUSE of the mitochondrial disease. I still don't feel there was a case here, I think this child would have been diagnosed with mito vaccines or not.

Here is my comment I posted on AutismVox:

FYI...vaccines ARE recommended for children with mito!!!! Some are advised to avoid a shot, ONLY if a history of bad reactions exists (which holds true for the general population). My friends whose children have mito ALL vaccinate their children and are mortified by people who opt to not give shots to their kids because of quack science (vaccines=autism). Those un-vaccinated children put my child and my friend's children at risk for contracting serious diseases. Diseases that most certainly would land a child with mito in the ICU & possibly kill them.

Go here: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3616911/apps/s/content.asp?ct=4211851 and read. I will also add, it is HIGHLY unlikely that a child with autism has mito, especially if that child has never been hospitalized, doesn't have severe health issues, eats on their own, there is no muscle-wasting, vision impairment, heart defects, etc. Read more about mito at umdf.org & see how autism doesn't equal mito, and how this case has nada to do with what Kirby is fighting for!


From a "mito mom" on a message board:
"For mito kids with no history of reaction, no family history of reaction, etc... the general agreement is that vaccines are not only reccomended but htey are more critical, as viruses are so dangerous for mito kids."

And, from actual doctors who work with mito patients:

To our understanding - it is not the immunizations themselves that are harmful in mitochondrial disease - but rather the potential for associated fever after the injection, since a fever might precipitate a "metabolic crisis."

In regards to immunizations and autism, medical authorities on the matter world-wide feel that there is nothing about the vaccines or the mercury in them that cause autism. There may potentially be a subset of children inherently at risk of autism that have their symptoms become more noticeable after any illness - including the fever brought on by immunizations. However, there is no good medical evidence to support such a theory either.

Your son seems to have had both, an allergic reaction (splotches) and regression (autistic behavior) correlating with the time he received the MMR vaccine.

If you have a concern that he will have another allergic reaction to the immunizations, I recommend that your pediatrician consult an allergist, to ensure that such a reaction is avoided. The allergic reaction might have been enough of a 'catabolic' reaction to bring out metabolic symptoms in him. For the vast majority of children and adults, the benefits of the vaccines do outweigh their risks - but in case your child is one of a few individuals who is more sensitive to the body's changes that occur after an immunization - I agree with approaching this matter with caution. In such a case, holding off on a 'booster' vaccine until he is older or more developmentally stable, is a reasonable decision.

There are no other specific guidelines or precautions that I can provide - except that any post-vaccine fever should be treated, and that he should be kept well-hydrated afterwards.

Answered by: Sumit Parikh, MD

And:

The medical literature has absolutely no articles on immunizations/vaccinations in individuals with mitochondrial disease. In the absence of any studies, there is only clinical experience and opinion. Personally, I know a few cases of severe complications following routine immunizations in children with mitochondrial disease, generally in those who were later diagnosed as such. However, in almost all of these cases the child stopped eating because of feeling ill, and I believe that most of the complications were actually provoked by fasting. Fever may be more common following immunizations in mito kids than in children in general, possibly because abnormal autonomic nervous system responses (dysautonomia) are very common in mito disease. Of course, febrile children are fussy and may not want to eat much. Since immunizations protect against serious diseases that could really cause complications if a mito kid were to get them, and because of my own clinical experience in that over a hundred mito kids safely received immunizations when certain precautions were taken, with my own patients my practice is as follows:

Immunizations act like common viral infections in that they can cause a child to have fever, nausea, poor appetite, and/or malaise (generally feeling bad). At these times, pay extra attention that your child is getting adequate calories. Fruit juices are one option to get quick calories in a child who is eating poorly. Fever increases energy demand, and should be treated with the proper amount of acetaminophen (Tylenol, etc.) or ibuprofen (Advil, Motrin, etc.). Seek prompt medical attention for continued vomiting, inability to take almost any calories for over 24 hours, and especially for lethargy (excessive tiredness) or an otherwise altered behavior (including excessive fussiness, confusion, etc.). Occasionally, IV fluid with D10 (10% sugar) may need to be given.
Any mito kid with a severe immunization reaction in the past should probably avoid immunizations altogether.


Answered by: Richard G. Boles, MD

To read the questions for the answers, please go here.


I'm going to just let it all go now, after I say these next few things. And, hopefully this will be the last time I post on this. This has got me so angered because of what mito is versus what autism is. Mito kills many children each year. A friend of mine lost her daughter at the age of 2. That is not autism. Trust me, anti-vax parents, you do not want mito. And, should it come out your child does indeed have mito, you'll wish you had gotten those vaccines.

I do feel Kirby perhaps brought to the attention of many one important thing: that in some cases, autistic symptoms can be attributed to a genetic, metabolic, or mitochondrial disorder. So, if you have an autistic child, it is worthwhile to do some screening for that. With regard to mitochondrial disease, I would only recommend testing IF a child had autism accompanied with feeding difficulties, hypotonia, movement disorders, organ defects, lactic acidosis, elevated liver enzymes, multiple hospitalizations, etc. If my child had autism that began with a true regression, I would more than likely look into mito as well. More advice, seek out the top doctors in the field. We had to hop on an airplane for our daughter's testing. It was all very expensive also, even with insurance coverage. Also, keep in mind that testing for mito includes having your child be sedated while getting a skin & muscle biopsy, a spinal tap, catheter for urine sample, as well as blood drawn. There is also substantial pre-op workup as well. This is not something to be taken lightly.

Lastly, I might add, with hesitation, something about these parents who are now jumping at the bits about mitochondrial disease. 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. The injury you feel your child received--autism--from a vaccine, and I don't mean to be rude, pales in comparison to what most families who battle mitochondrial disease have to contend with.

I am so glad my child's results for mito came back negative. The period of testing & waiting was a nightmare, I was so scared. I wouldn't wish mito on my worst enemy. I pray that a real treament for mito is found SOON. My child has autism, and she also has a long list of other diagnoses and medical issues. She was born with heart and kidney (requiring surgery) defects, shd has a feeding tube with which she gets most of her liquid intake through, she has had various GI problems, many neurological issues, as well as breathing problems, the list goes on. The first 1-2 years of her life was filled with doctors visits, tests, and procedures. We have boxes, BOXES for her medical records. She's been hospitalized for rotavirus, RSV, and surgeries. She ended up in the PICU following one surgery. She has had 2 PICC lines. She's had MRSA four times.

I have incredible discontent for people who do not vaccinate their children. I read a mom's comment one time about when her children had one of those diseases (she doesn't vaccinate her kids), and how it was no big deal. Okay, maybe for your kid--but not for mine. My child, along with thousands of other special-needs kids would most likely be hospitalized, and be at far greater risk than her child. Kids like mine typically catch more germs when they are in a hospital. During an illness, things can literally be touch & go. My daughter has already contracted chicken pox (thankfully, she had receive the vaccine, so it was fairly mild, although she did have seizures during the illness), I cringe knowing the number of kids she is in contact with who are not vaccinated grows each day.

Each time my daughter gets sick, even with the "common cold," our reality is waking up every 2-3 hours to give her medicine and push fluids through her feeding tube, as well as monitor her for seizure activity, all of this to keep her out of the hospital. Often, her colds require breathing treatments as well. For her protection, and again with an end-goal of keeping her out of hospitals, our doctor prefers we call to receive medical advice (& even prescriptions) or in the event we have to come in, they immediately put us in a room. Her specialists whose offices are inside of a children's hospital ensure her follow-up appointments are not during the winter (flu season) months. We've been lucky that with each year, her overall health improves. I'm so thankful for her doctors who have been proactive and helped her overcome such odds.

To see her, you may not even realize how hard she's had to fight. But I remember, I will never forget the truly heart-wrenching times. I've said it before, the "worst" day with autism is the brightest most wonderful day compared to 5 seconds in the PICU with your child.

I truly hope that all these parents who are now chatting on and on (and in a sick way, getting excited) about mito realize how lucky they are. If they've not been touched personally by a disease like mito, or if their child has never been in the intensive care unit, or if other than autism, their child is pretty healthy, they have no idea. For the majority of them, they have no clue what it's truly like to see their child suffer.

12 comments:

kristina said...

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!

Camille said...

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?

hollywoodjaded said...

spectacular blogpost. thanks much.

Sharon said...

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.
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."

He should go meet a few families dealing with mitochondrial disease.

LIVSPARENTS said...

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...

Chuck said...

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.

L Parker said...

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.

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.

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.

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.

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.

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?

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.

So, since we vaccinated, we aren't "anti-vax," and since we also happen to have mitochondrial dysfunction, we are YOU.

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.

Anonymous said...

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.

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.

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?

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
mitochondrial defects."

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.

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.

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"?

S.L. said...

l parker: 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.

"ANON"
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.

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.

Lastly, you claim this is my statement:
"mito is rare, nobody with autism has it"?
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.

Anonymous said...

Response from Anon Above

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?

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).

"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."

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.

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.

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.

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.

kacie said...

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.

mitomom said...

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.

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.

There is a study about to happen in Boston where they look at Mito/Vaccinations.

I don't think enough is known about either disease at this point.

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.

You are not a medical professional and you should not be giving any type of medical advice in a blog.

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.

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.

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!