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.

2/27/08

Celebrity "Autism Moms," Are You Listening?

Perhaps the Hollywood Autism Mom's club, along with the "celeb" mothers a la "Autism Everyday" could learn a thing or two from the so-called "bad-boy" turned obviously proud and devoted father, Colin Farrell. I wonder if they are listening?


Colin Farrell Says His Son Is Exactly the Way He Should Be

“He’s nothing but a gift,” Farrell, 31, said about son James on the Irish interview show Tubridy Tonight. With paternal pride he said: “As far as I’m concerned he’s exactly the way he should be.”

The genetic disorder, which can impair speech, movement and balance meant that James walked his first few steps last fall, when he was 4. “It’s just different,” said the actor. “It’s not different to me. He has his own path. He’s just brilliant.”

“I didn’t talk about my son [but] I felt like I was betraying him, like it could be misconstrued as shame, which would be terrible, because he’s such a celebration,” says Farrell.

Questioning the concept of “normal,” Farrell says his son is happier than so many people in the world. “I look around and I see people who move perfectly, who walk with grace, who speak with great diction and clarity and a great use of the English language and we’re all miserable f—ers – including me, at times.

“And then I see this fella who doesn’t move the way what’s perceived to be ‘normal’ is, and he’s as happy as can be.”


Wouldn't it be nice if one day a celebrity, or other parent in the public eye, speak such loving, passionate words about their autistic child--for all the world to hear? There's no pity party here for Mr. Farrell. He's not pleading for sympathy, contemplating jumping off a bridge, or spatting about controversial cures. No, he has taken a path (not often traveled by parents of autistic children we see over & over again in the media) in which he celebrates his son, advocates for his child and others with Angelman Syndrome. It is my hope that his words will inspire and encourage others to follow his lead (Jenny? Anyone?).


Bold & enlarged by author!! Link to complete article above.

Thank You, Colin Farrell

This is something I wrote about elsewhere, a few months ago. I was reminded of it by a story I found yesterday.


I read this article today & wanted to share. I will say one error in the reporting--they say that Angelman Syndrome is a form of Cerebral Palsy. It is not, Angelman Syndrome is a genetic disorder that does share some characteristics of CP. I have a feeling the reporter did some research, possibly read "Static Encephalopathy" and came to CP. Who knows. Or, perhaps more people could put a picture to or understand what CP is, than just explaining Angelman Syndrome. I know about CP & Angelman's, as they were things doctors have looked into and ruled out for our daughter.

Anyway, I've put in bold the words that I felt were especially moving. Whenever the spotlight is shown on famous people who have a child with a disability or disease, I think it helps us average Joe's living with a special-needs child. It shines light on something perhaps not too many people would otherwise learn of or support help for. Celebs can certainly raise major money for their causes. Sometimes, the famous parents will speak well about it & make a positive impact. Other times though, you wish they'd just shut-up!

But, today is a rare moment when an actor blew me away with his words of love & acceptance for his child. I've always had a bit of a crush on Mr. Colin Farrell--he's cute & the accent really gets me! I'm not being biased though--read what this amazing father has to say:


Superstar Colin tells of 'blessed' life with special needs child

October 15, 2007

Hollywood superstar Colin Farrell yesterday opened his heart and revealed that his four-year-old son James is a special-needs child.

The renowned Irish actor revealed that his treasured son was born with a rare form of cerebral palsy called Angelman Syndrome.

In a moving interview, the actor described how the condition has affected his sons speech and mobility.

But despite the heartbreak the syndrome has caused he said that he is "incredibly blessed to have him in my life" and told of his joy when James recently took his first steps.

He said that his son had shown "amazing courage" in the first four years of his life and that he is an "incredibly happy boy" despite his condition.

Ironically Colin – who has joint custody of James with his mother Kim Bordenave – proudly led the Irish team to Croke Park for the Special Olympics before his son was born.

Colin – who has starred in such movies as Miami Vice and Phone Booth – said that James has "enriched" his life "incredibly."

And he said that he is dedicated to helping his son reach his own "individual potential" and to be "as happy as he can be."

"With my son the only time I'm reminded that there is something different about him – that he has some deviation of what is perceived to be normal – is when I see him with other four-year-olds.

"Then I go "oh yeah" and it comes back to me. But from day one I felt that he's the way he's meant to be."

The actor spoke with pride about the barriers his son has overcome in the first four years of his life – and paid tribute to his exgirlfriend Kim for being proactive in getting James the early intervention he needs.

"He took his first steps about six weeks ago and it was four years in the making. All the work is his, he worked his arse off for four years."

"And when he took the first steps it was incredibly emotional, there wasn't a dry eye in the house."

He's broken that barrier and its all about building on that now.

Although Colin has been juggling a career in Hollywood since he first burst onto the scene in 2003, he is dedicated to spending as much time as possible with his son.

Little James has already met with his extended family in Dublin and even Colin's new girlfriend, Irish student Muireann McDonnell.

The irony of having a child with special needs – months after becoming involved in the Special Olympics and being faced with the same challenges – is not lost on the actor.

But, he is adamant that anyone who has a disability can still contribute to society and have a full and happy life.

"Its mad the way the world works. It's bizarre. I experienced the overwhelming effect of being around those athletes pretty much just before my son was born with special needs.

"I have never thought of my son as being someone with a disability. It goes back to special needs and what is a disability and what isn't."


Another article, with more positive remarks, here.

2/26/08

More Questions for David Kirby--More thoughts too...

Added this, from my comments in reply to Leila, but felt it was worthwhile to paste it here:

...you are born with a mitochondrial disorder (it's passed genetically from mother to child). Most people get diagnosed in childhood, others not until they are adults. Often, if a child is more affected, they'll be diagnosed & subsequently other family members, siblings, mother, etc. are then diagnosed (& may be asymptomatic).

It varies as to when the disease may "show its face." For some, it's apparent at birth that something is wrong, but often the accurate diagnosis isn't made for months to years. For others, the affects of the disease worsen with time, and others it remains "dormant," if you will, until older childhood. The pattern that is described in this particular case, a child with chronic ear infections who then develops neurological symptoms, would fit the mito mold. Regression, and/or addition of symptoms is not uncommon in mito. Sometimes, it is an illness that puts the disease in the spotlight. For my child, it was a liver enzyme test result and lactic acidosis (plus history of neurological issues, delays, physical defects, etc.) the led them to suspect mito and send us for testing. Our case was fairly typical, among other families I have met who have mito.

I really don't know how or who could point right to the vaccine, and say that's what aggravated or worsened her mito. Yes, people with mito can have immune reactions, etc. But, was it the vaccine? A virus? It could have been any number of "triggers" OR simply the disease escalating on its own.

I really, really would love to read more as to why the gov't conceded. I have a strong feeling it was due to lack of understanding of mito and/or assuming the vaccine was the only possible agitator. How strong does the burden of proof need to be in a case like this? I assume if there's the slightest chance that a vaccine could have negatively affected this child, then they had to concede. But, again, this does not set a precedence for the majority of vaccine-autism cases, as it has nothing to do with those.



PhotobucketSo, I read more into this case, regarding the "Government Concedes Vaccine-Autism Case In Federal Court - Now What?" article by David Kirby. And, I'm throwing some questions back at him.

This is my reply to Kirby's piece. The link I refer to is this (please read!!).

Please go to the link above and READ THE FACTS:

This child has a mitonchondrial disorder, as diagnosed by one of the foremost experts in the field. Learn & understand mito, and realize this case has NOTHING to do with the views you have regarding autism & vaccines.

I know most here are energized by this case's decision, but there is no connection whatsoever to this child's case and the majority of you here. Furthermore, if you read the case information and educate yourself on mitochondrial disorder, it becomes apparent that solely blaming vaccines, even in this case, is utterly inappropriate. I am dumbfounded by the decision made here. With all that is known about mitochondrial diseases, its symptoms and patterns, it cannot be said whether this child would not have had a regression without the vaccines. Additionally, who is supposed to be held accountable here? This child has a DISEASE that affects every organ in her body, no one knew that when she had her vaccines. Whose fault, exactly, is that?

After reading the additional information for this case, I am even more enraged. What is extremely interesting is that NO WHERE in the case documentation does it state this child was ever diagnosed with Autism. I'll repeat, despite the title of Kirby's article, and his own claim that the "girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism," this child was not diagnosed officially with autism (unless that one key point was left out of the now-open records). Instead, the child was given labels like "with autistic features," etc. Furthermore, this child had a history of ear infections, requiring tubes, prior to the last dose of vaccines and subsequent regression. Also, once tests were begun on this child, abnormalities were apparent:
In his assessment, Dr. Kelley affirmed that CHILD’s history and lab results were consistent with “an etiologically unexplained metabolic disorder that appear[ed] to be a common cause of developmental regression.” Id. at 7. He continued to note that children with biochemical profiles similar to CHILD’s develop normally until sometime between the first and second year of life when their metabolic pattern becomes apparent, at which time they developmentally regress. Id. Dr. Kelley described this condition as “mitochondrial PPD.” Id.
This led the family to Dr. Shoffner in Atlanta (the same physician we in fact saw for our daughter), he is an expert in the field and highly respected. He ran the same tests on this child as our daughter, and several irregularities were found:
A CSF organic acids test, on January 8, 2002, displayed an increased lactate to pyruvate ratio of 28,1 which can be seen in disorders of mitochondrial oxidative phosphorylation. Id. at 22. A muscle biopsy test for oxidative phosphorylation disease revealed abnormal results for Type One and Three. Id. at 3. The most prominent findings were scattered atrophic myofibers that were mostly type one oxidative phosphorylation dependent myofibers, mild increase in lipid in selected myofibers, and occasional myofiber with reduced cytochrome c oxidase activity. Id. at 7. After reviewing these laboratory results, Dr. Schoffner diagnosed CHILD with oxidative phosphorylation disease. Id. at 3. In February 2004, a mitochondrial DNA (“mtDNA”) point mutation analysis revealed a single nucleotide change in the 16S ribosomal RNA gene (T2387C).
How and when vaccines came into this, I have no idea. Again, as a parent who at one time feared my child had mitochondrial disorder, one of the things I feared most was regression, loss of skills, etc. How and who actually proved it was the vaccines at fault, and not the mitochondrial dysfunction? And, once again, if it was indeed the vaccines that affected or worsened this child's condition, who really is to blame? Her mother for giving her affected mitochondria? The doctors for not being psychic and testing her at birth for this disease? The vaccine companies, for not knowing that a pediatrician was going to inject vaccines, as a safeguard from illnesses like mumps, rubella, and pertussis, into a child whose body may not be able to handle it like the majority of the population?

Kirby tries to make some point here:

When a kid with peanut allergy eats a peanut and dies, we don't say "his underlying metabolic condition was significantly aggravated to the extent of manifesting as an anaphylactic shock with features of death."

No, we say the peanut killed the poor boy. Remove the peanut from the equation, and he would still be with us today.

Okay, Mr. Kirby, so then do we sue Planters & all the other peanut companies out there? Do we sue the grocery store for selling them? Do we ban peanuts completely? Do we hold someone accountable, if no one was even aware that the child had a peanut allergy and died or became very ill from ingesting a peanut????

Seriously, can anyone explain how the Division of Vaccine Injury Compensation, Department of Health and Human Services (DVIC) came to this conclusion? I'll be scratching my head for a good, long time on this one.


Bolds & large fonts added for emphasis by author!

The NYU Child Study Center Town Hall Meeting...hmmph

PhotobucketWell, I was hopeful. I even gave up a much-needed manicure for it. I have 3 hours a day to myself, for myself, where I have nothing to do but whatever the heck I choose. I felt strongly that today I needed to stay here at my laptop and see what this "Town Hall Meeting" was all about.

I will say I'm glad NYU Child Study Center actually did this, and I'm glad they are reaching out, it appears, to further this topic of public awareness (in, hopefully, a respectable manner). But, it seemed to me that while some good questions were asked, there weren't any answers. In fact, most responses felt more like pre-written soundbites. I don't know, maybe it was just me. The forum itself was a little flaky at times, it had a few kinks in it. My question was posted by "Anonymous" instead of the user name, S.L., I had chosen. Here it is:

What is being done for teens with autism etc., with regard to preparing them for adulthood, independent living, etc? Do you currently have programs in place to help these children (and their parents) ease into adulthood? It's great how far we've come with early intervention and the school system, unfortunately, at 18 or 21 , these individuals are essentially deserted, and often forgotten about.

And, the response:

Federal law mandates that at 15 every child classified with a disability begins a who are graduating from high school. Adult agenices are begining to understand the specific needs of young adults on the autism spectrum and plan more specific job support for them but we are just in the infancy of understanding how to truly integrate individuals on the autism spectrum into the workforce. in preparation for adulthood teens need to have a variety of work experiences, improve their social skills development and learn how to advocate for their own needs in the community. Professionals and parents need to ensure that these early steps are taken in preparation for adult life.
But what are you doing? What is NYU doing? From that "answer" I can only assume they do not have any such programs in place. The overall theme was "early diagnosis, intervention" and it appears they are holding onto that as being all that's needed. My daughter had early intervention (from before age 1 for developmental delays!), she's been followed by a neurologist from before she was a year old. Check, check. And now we wrangle our way through the school district, and hope they are helping my child in the best way possible.

I am still very concerned for her future. What will her options be after high school? What happens when her father and I are no longer around? What is waiting for her? Right now, the answer is nothing. I feel as if I'm running a marathon (unfortunately on a treadmill, as I feel I'm going nowhere) to find something for my child and all the others like her, who one day in the future will be 18. That day gets closer and closer, with only a bunch of talk about early identification and intervention, second to that is "cure."

David Kirby Asks Now What?? I'll Tell You...

PhotobucketNothing, Mr. Kirby, now nothing. This case has done nothing for your "cause." This will not change nor does it declare that vaccines somehow cause autism. Read the facts! Perhaps educate yourself on mitochondrial disease. Oh, and Mr. Kirby--it is Rett Syndrome not Rhett (it was not named after Gone With The Wind), once again, get your facts straight!

Once again, he's at it, and he's pretending to be a balanced journalist by blurring all the facts. He almost entirely dismissed the MAJOR fact here that this child had a mitochondrial disorder (verified by a test, a gene identified). Having been through mito testing for my own child, and having a few friends whose children have a mito disorder, it's comparing apples to oranges (autistic children to those who have a mitochondrial disorder, along with or presenting as ASD). A child with mito cannot handle certain vaccinations, or need to use extreme caution with them. Likewise, these children have fragile immune systems, and often will be hospitalized for illnesses (ones that most children would never be so sick or be in the hospital).

Our daughter has several physical & developmental diagnoses. For some time, the basket of names included "autism-like symptoms" or "atypical autism." After age 3, she received the diagnosis of autism. This was after all (for the most part) genetic and mitochondrial disorders were ruled out. There are MANY disorders that can either have autism as part of it or in which the child's symptoms are similar to ASD. Children who are "mildly" affected by their genetic or mitochondrial disorder can sometimes go years before diagnosis. Because of my daughter's many physical health issues, the doctors still feel we have eventually have an "umbrella" diagnosis (i.e. genetic, mito, or metabolic identified disorder) in which all of her symptoms fall under.

If my child was found to have a mitochondrial disorder, there would be several immediate changes:
*Review of vaccine schedule, depending on the disorder, she may not have been able to receive further shots or have a unique shot schedule with multiple precautions
*Extreme precautions with anesthesia
*A letter outlying the steps for emergency personnel to manage the child's health during illness and/or emergencies
*A "mito cocktail" would be started, things like CoQ10 & L-Carnitine have been found to help those with mito disease
*We would have seen multiple specialists to rule out other signs or problems related to mito (a cardiologist, endocrinologist, nutritionist, etc.)

From the U.M.D.F.'s website:


Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.
Also from their site, the U.M.D.F. lists these symptoms: developmental delays, seizures, mental retardation, neuro-psychiatric disturbances, migraines, (OH AND) autistic features. So, if David Kirby took anytime to read up on mito, he'd be well aware that is nothing new. Many children either first diagnosed with mito go on to present with autistic features or that children diagnosed with autism may then go on to be found to have a mitochondrial disorder. This is true for other diagnoses too--how many kids are first diagnosed with speech delay, sensory processing disorder, atypical cerebral palsy, seizures, or static encephalopathy who go on to receive an autism diagnosis? I know of many.

There's this KEY piece of Mr. Kirby's "article" in which he, again, adds his own two-cents as fact:

Seven months after vaccination, the patient was diagnosed by Dr. Andrew Zimmerman, a leading neurologist at the Kennedy Krieger Children’s Hospital Neurology Clinic, with ‘regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development.’ The girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism.
Yes, that last sentence is Mr. Kirby's own. My child had the diagnosis of "static encephalopathy with features consistent with autism spectrum disorder" for a time. At that point, the doctors were quick to point out that didn't necessarily mean she had autism, or that in time, she would still exhibit those features. Of course, in time, she was diagnosed with Autism officially. If you were to research "encephalopathy" one would see that there again, PDD is a feature of, along with seizures, sensory issues, etc. Static Encephalopathy is my daughter's umbrella neurological diagnosis, encompassing her many neurological symptoms.

It is a shame that in this particular case, the child was not earlier diagnosed with mito, so that precautions could have been taken. However, I don't see anyone being at fault here. The only reason why I would think someone would be held accountable here would be if a doctor determined this child had mito disease, but failed to let the parents know (& then the child went on to have vaccines, bringing on more severe autistic features). The fact is, while it may be likely these vaccines affected this child and brought on the autistic features, children with mitochondrial disorder can often suffer regressions. Simple colds for you or I can land these children in the ICU. Illness can also cause them to lose previously achieved skills. So, even in this case and with the court's judgement, I do not think it can be said 100% that is was solely the vaccine at fault.

The silver lining is that the form of mito that she has, is one that does not immediately threaten to shorten her life. There are children with mitochondrial disease, who if they make it to their eighth birthday, it would be a miracle. A close friend lost their child at 2 years of age from mito. There are children who are never able to walk, to attend school, etc.

The real tragedy here has nothing to do with vaccines, mercury, thimerosal, or even autism. No, the tragedy is that this child has mitochondrial disease, and that it is something she'll have to deal with for the rest of her life. The silver lining is that the form of mito that she has, is one that does not immediately threaten to shorten her life. There are children with mitochondrial disease, who if they make it to their eighth birthday, it would be a miracle. A close friend lost their child at 2 years of age from mito. This child is now receiving the medical care she needs and will need for the rest of her life. Someone left this comment for Mr. Kirby's article, I have not verified it:

Now 6 years old, our patient has been treated with vitamin supplements since 2�����years of age. Even before starting supplementation, the patient began speaking again at 23 months old and had a four-word vocabulary of "bubbles," "ball," "drink," and "cracker." Levocarnitine 250 mg and thiamine 50 mg three times per day were initiated when the patient was 29 months old. Coenzyme Q 10 was added at age 33 months. Although she still exhibits mild autistic behaviors, our patient has continued to improve in language functions and sociability such that she now attends a regular kindergarten with an aide. There have been slow yet steady improvements in muscle tone, motor coordination, and gastrointestinal symptoms with occupational therapy, applied behavioral analysis interventions, and mitochondrial enzyme cofactor supplements. After the age of 2 years, growth trajectory has continued along the 75th percentile for both height and weight. Laboratory tests were repeated at ages 2 years and 10 months (aspartate aminotransferase 47 IU/L, normal <>
So, essentially this child no longer has the "Autism" diagnosis. But rather, she requires help for manifestations of her mitochondrial disease. So, once again, Mr. Kirby--what does this have to do with your "followers" whose (as far as they know) children do NOT have mitochondrial disease? Nothing.

If you read the facts, Mr. Kirby, it should be clear to even you that this case stands alone. I would perhaps suggest that if a child has autism or "autistic features," along with any physical issues, that the parents ask their pediatrician or neurologist about mitochondrial or genetic disorders. The treatments that may be available for those diagnoses, may help their child. Aside from that, there is nothing in this case to help "your side" or your ongoing anti-science declaration that vaccines cause autism.

To ready Kirby's "article," go here: http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html#postComment

2/21/08

About The Artist & About What We Leave For Our Children

Being an artist myself, the information gained regarding that picture from my last entry peaked my interest. Glen Angus was a very talented artist, and he died tragically young. He describes the picture of his son here. It is worthwhile to read it, at least for me it was.

I think, if nothing else, a painting like this and the comments left by cs, should remind us all about the legacy we are leaving for our children. We are all human, and emotions can often take control of our words and actions. Parenting is a hard job, parenting an autistic child can sometimes be very emotional. It can be therapeutic to blog, "vent" on a message board, or paint, to better express our feelings and to "take a load off." But, I think we must always remember, first and foremost, that our children are beautiful human beings, full of life and with futures ahead of them.

I am only human, and I'm sure I may have said something at some point regarding my child that I'd prefer her not hear in 10 years from now. I remember crying to my husband one time about the future, and feeling so sad for my daughter. This was at a very emotional time, we had just received the autism diagnosis (on top of several others). We were on a roller coaster of physical health issues, and I was caught off guard (as most of us are!) at first for the meltdowns and other behaviors. I felt like a terrible mother, and mostly, I felt bad for my child who was having such a difficult time.

So, I get that. I've had those moments. I'm sure I'll continue to feel those natural pangs in my heart from time to time (albeit much briefer, as I'm now better prepared for our life & I have a greater understanding of autism). But, I'm a different person than I was when we first heard "autism." I know so much more, I know my daughter so much more. Just as I suspect Glen Angus would have felt if he were still here. I'm certain he'd have delighted in the strides his son was making, and feel much more hopeful.

This should remind us all to be careful of how and what we say regarding all of our children, autistic or not. In this day in age, with all of us blogging, hitting message boards, having MySpace pages, etc., our children will have an enormous internet catalog of our life. Our thoughts and feelings about them will be right there out in the open, should they be curious and able to investigate. I can say without a doubt that I would share this blog with my daughters without a thought. There may be some posts I would feel I'd want to further discuss and explain with them. I am honest here on my blog, and more than anything, I take into account the very real possibility of my children growing up and reading what I've written. We all need to be cognizant of what we say, in the real world, online, and most importantly in front of our children. I want to reiterate that the last part may serve as a very crucial reminder to parents on nonverbal children.

I am going to take the picture off. If you missed it and are curious, you can see it here, along with the artist's description.

About The Artist & About What We Leave For Our Children

Being an artist myself, the information gained regarding that picture from my last entry peaked my interest. Glen Angus was a very talented artist, and he died tragically young. He describes the picture of his son here. It is worthwhile to read it, at least for me it was.

I think, if nothing else, a painting like this and the comments left by Anonymous, should remind us all about the legacy we are leaving for our children. We are all human, and emotions can often take control of our words and actions. Parenting is a hard job, parenting an autistic child can sometimes be very emotional. It can be therapeutic to blog, "vent" on a message board, or paint, to better express our feelings and to "take a load off." But, I think we must always remember, first and foremost, that our children are beautiful human beings, full of life and with futures ahead of them.

I am only human, and I'm sure I may have said something at some point regarding my child that I'd prefer her not hear in 10 years from now. I remember crying to my husband one time about the future, and feeling so sad for my daughter. This was at a very emotional time, we had just received the autism diagnosis (on top of several others). We were on a roller coaster of physical health issues, and I was caught off guard (as most of us are!) at first for the meltdowns and other behaviors. I felt like a terrible mother, and mostly, I felt bad for my child who was having such a difficult time.

So, I get that. I've had those moments. I'm sure I'll continue to feel those natural pangs in my heart from time to time (albeit much briefer, as I'm now better prepared for our life & I have a greater understanding of autism). But, I'm a different person than I was when we first heard "autism." I know so much more, I know my daughter so much more. Just as I suspect Glen Angus would have felt if he were still here. I'm certain he'd have delighted in the strides his son was making, and feel much more hopeful.

This should remind us all to be careful of how and what we say regarding all of our children, autistic or not. In this day in age, with all of us blogging, hitting message boards, having MySpace pages, etc., our children will have an enormous internet catalog of our life. Our thoughts and feelings about them will be right there out in the open, should they be curious and able to investigate. I can say without a doubt that I would share this blog with my daughters without a thought. There may be some posts I would feel I'd want to further discuss and explain with them. I am honest here on my blog, and more than anything, I take into account the very real possibility of my children growing up and reading what I've written. We all need to be cognizant of what we say, in the real world, online, and most importantly in front of our children. I want to reiterate that the last part may serve as a very crucial reminder to parents on nonverbal children.

I am going to take the picture off. If you missed it and are curious, you can see it here, along with the artist's description.

2/19/08

[UPDATE] What's Wrong With This Picture????

Thanks to cs who left this in my comments, thank you for the information & for your eloquent sentiments. I agree with your perspective on this, you stated it beautifully. Thank you again.


"It was painted by artist Glen Angus to raise support for a bill in his state, if I remember correctly. I think it was to help cover the cost of ABA therapy or something.

I also find it offensive, but knowing the pain he must have felt when he painted it tempered that a bit. When I first saw the image I thought at least it would be interesting to see how his view would change with time.

The tragedy I see in the image isn't what the artist intended, though. Glen passed away shortly after the image was made. The real tragedy is that he didn't live to see his child grow and progress...perhaps he would have come to terms with things better in time.

He seemed like a nice man; he was a good artist, and I know he is missed in the art community.

I think it's tragic that he died with this weighing on his heart so heavily. Ultimately, I just feel very very sorry for him and his family."


Please visit this page to see the picture.

I do not know the origin of this picture. I often search via google, photobucket, & other image search engines for "autism." I'm curious to see the images, often they are very dark & depressing pictures. This one in particular was so startling. It was on Photobucket. If anyone knows its origin, please let me know. I am curious about the person or parent behind it.

The fact that the child is depicted as being buried in the dirt is very disturbing. The image of the child being in prison stripes in a jail cell furthers the stigmas that autistics have been taken hostage or have been kidnapped. The sentence underneath its title (Autism) is "Find my son before time runs out free him from the prison of his mind." What a sad statement for a parent to make about their child.

It's Not About Abortion Rights

I found a few more articles, worth a read, and wanted to share (on the topic of aborting babies with Down Syndrome). I also wanted to add, that I strongly feel that "selective abortions" for the sake of a fetus' disability has little to nothing to do with "abortion rights." As I understand it, the Pro-Choice movement is about choice. It's about a woman's right to have a safe abortion. Quite often the argument revolves around cases of rape, incest, etc. It's never been about eugenics, gender selection, etc. This is not necessarily a debate or topic I really want to open up here & now. I simply want to declare firmly, the promotion and almost forced abortions to woman who are pregnant with babies who have down syndrome is not about woman's rights. Whether you are on the "pro-choice" or "pro-life" side, you must realize that what is going on in OBGYN offices across "developed" nations is dark & unforgivable.

This topic is close to me because I've had the pleasure of knowing several children and adults with Down Syndrome. I can't imagine them not being here. I also see how in the near future, a prenatal screening for Autism will be available. I fear how many more abortions will occur, all for the sake of it being "better for us all." Whatever that means.

This discussion brings me back to a few years ago. My sister was pregnant, and her AFP results indicated an abnormality. My sister decided to have the amniocentesis, despite the risks involved. She was nervous, leading up to the amnio, and then the days that followed waiting for the test results. In those days, I distinctly remember her telling me, "I know you could handle this, I just don't think I could." She felt I could raise a child with Down Syndrome, but for some reason, it would be impossible for her to do so. Mind you, this was all before my youngest child was born--before Autism, feeding tubes, and special ed! I remember thinking, in the days awaiting my sister's test results, about my nephew who was developing inside her. I was sad to think I may never meet him. I even figured I would try to convince my sister to let me adopt her child. It was then that I truly saw the horrors of prenatal screening, and how putting such a decision into expectant parents is awfully cruel.

The amnio results came back, and all was fine. While it was a welcome relief for us all, I was angered further of the weeks that were lost because of the damn test results. It was nearly a month taken away from my sister's joy of being pregnant. That was replaced by almost 4 weeks of worry, despair, and torment. I've heard of so many others having that similar false-positive experience. I think of all the beautiful babies who will never be born all because they have Down Syndrome. I can see how in theory prenatal screening is good. Unfortunately, many have taken it to mean automatic abortion for those babies who may be different.

Worth reading & contemplating:

Defining Life Down: Are we okay with eliminating a class of humans?
by Kathryn Jean Lopez
Down Syndrome, Abortion, and Disability Rights by mjohnson

and then there's this...

One Woman's Choice by Maria Eftimiades
It's a sad story, but one I feel should be read. I'm still scratching my head how something like this would ever be published in the Washington Post, or any other publication. Some quotes I found especially disheartening:


If your child will be born with a severe disability, is there a "Get Out of Jail Free" card or are you still a baby killer?

While I have no doubt there can be joys and victories in raising a mentally handicapped child, for me and for Mike, it's a painful journey that we believe is better not taken. To know now that our son would be retarded, perhaps profoundly, gives us the choice of not continuing the pregnancy. We don't want a life like that for our child...

...how wrong it feels to bring someone else's morality into the discussion.

As for that baby that will never be, I will remember him always. But I'm quite certain that I made the right choice for the three of us.


**All of these articles are from 2005, old but (unfortunately) not outdated. I was not blogging nor as involved in advocacy & disability rights as I am now, of course. Figured others may have missed these too.

UNC Prof Suggests Abortion for Down Syndrome Babies

PhotobucketThis is not the first, nor will it be the last time we ever hear anything like this. No, for some sad & strange reason, a large section of humanity is going backwards. Back to the time of Hitler and killing for the sake of developing some supposed "perfect" human specimen. There are many scholars, doctors, and others who feel that a child with any chromosomal defect or other possible disability should not be brought into this world. The majority of parents are counseled on how difficult life would be raising a child like that, and that abortion really would be best for everyone. It is very disturbing, and I have no doubt it is only going to get worse and further escalate as genetic screenings become broader. Yet one more reason why Autism Speaks makes me queasy. A bulk of the research they are funding is working toward finding genetic markers, which will undoubtedly lead to prenatal screening.

At any rate, a screening for Down Syndrome exists here and now today. It's been estimated that more than 90% of all pregnancies thought to be carrying a child with Down Syndrome are aborted. That's 9 out of 10 babies, 9 out of 10 human beings that will never be able to make a mark in the world--all because of an extra chromosome. It's sad to hear the stories of parents who were counseled by their "trusted" physician on why bringing such a child into the world is not advisable. There's also the rates of false-positives and other issues with the testing itself (risk of bleeding, miscarriage, etc. with amnios).

Back to the article from a that caught my attention.


"In my opinion, the moral thing for older mothers to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does," he said, according to a Raleigh news and Observer report.

He told the newspaper he has no apologies for the remark.

"I know somebody who had a child like this, and it ruined their life," he said.

Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City, told the Associated Press, "I think you can see rather quickly why our community would be concerned about it when you are talking about eliminating a whole race of people."

ACTION: Contact UNC about Professor Harris at Office of the Chancellor, 103 South Building, Campus Box 9100, Chapel Hill, NC 27599-9100. Email chancellor@unc.edu, call (919) 962-1365 or fax (919) 962-1647.


Reading this type of article just sickens me. And to think, this is someone teaching our future doctors and scientists. What will the world-view on disabilities and differences be in 10 years from now? 20 years? It's a scary thought. Prenatal screening is a slippery slope, and ultimately, I can only see it leading to bad things. Scratch that, it has already led to bad things.

All I know to do now, is to share my wonderful & beautiful child with the world, and to embrace others who, like my daughter, are different--and amazing because of it! I found this, and thought it was fitting. It is nice to see so many parents speaking out for their children (with Down Syndrome), I see many parents of autistic children (slowly but surely) following their lead.

Photobucket

I have previously written on what I call an assumed "Neurotypical Entitlement" that expectant parents often seem to feel they have, see here.

2/18/08

Perhaps The Media Will Listen?

PhotobucketThrough the Autism Hub, I was recently notified about a letter from the AAP (American Academy of Pediatrics). They have recently been rather verbal regarding the show, Eli Stone (read Autism Vox for wonderful posts & background on this) and the storyline in which a fictional "mercuritol" apparently causes autism, yada, yada, yada. It's great to see a group so large, actually speaking out about something like this. The AAP feels very strongly that a show like this, and others, further promotes the anti-vaccine agenda, and this is very dangerous (see my video below, if you are unsure what skipping vaccines can lead to). I am glad that such a large, and well-organized group is taking such a stand. I cheered when I read this letter, it's wonderful to think that our side will be told in the media. Parents, and the public, must see the danger in not vaccinating, the harm of placing blame on something that science continues to dismiss, and furthermore, see positive, heartfelt stories of us loving our autistic child and embracing the life we have. Please get involved, if you feel you can. You may leave your contact info in my comments, or email at stopthinkaustismATgmailDOTcom. Here's the letter, and my video is below.

Hello,

As part of our ongoing response to media stories regarding autism and
vaccines, the AAP communications department is compiling a list of
parents who support the AAP and are available for interviews. We are
looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support
immunization and who do not believe there is any link between their
child's vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This
could be a parent who declined immunization, whose child became ill
before a vaccine was available, or whose child was ineligible for
immunization.

We are asking for your help identifying parents who would be good
spokespersons. They do not need to be expert public speakers. They
just need to be open with their story and interested in speaking out
on the issue. We will contact candidates in advance to conduct
pre-interviews, to offer guidance on talking to reporters and to
obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and
contact information to select media. We hope to build a list of
parents from a wide range of geographical areas.

As the Jenny McCarthy and "Eli Stone" stories illustrate, this issue
is likely to recur in the national and local media. The AAP is
committed to doing all we can to counter such erroneous reports with
factual information supported by scientific evidence and AAP
recommendations.

The anti-vaccine groups often have emotional family stories on their
side. The ability to offer a reporter an interview with a similarly
compelling parent who is sympathetic to the AAP's goals is a powerful
tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics



If you've read my blog before, you most likely know my views on my own child's autism & where it may have come from. I strongly believe, I KNOW my child was autistic as an infant, as a newborn. I have no doubt her difficult time at birth was due to her autism, and neurological difficulties. We have a very vivid, very well-documented account of her developmental, physical and psychological health history from her birth. Her autism is apparent all along. I feel she was autistic from the moment we conceived her. I am often asked by other parents if I vaccinated my daughter. I say, absolutely! I tell them my fears of things like measles and other diseases my child would be at risk for without them. People truly don't realize that the diseases that have nearly been made extinct by vaccines are very lethal. In theory, skipping vaccines & possible toxins sounds great. Until your child becomes seriously ill or dies from one such disease.

I feel pictures say a thousand words. Here's my best argument for vaccines:

2/5/08

Gunnar Moody, Handcuffed At School...

We've all been bouncing illness between the family here, so I've been out of commission.  But, this came across my email & I had to get on and write.  My head is not quite clear, thanks in part to fever & medication, so I've included the original link to the story, as well as two other websites who have written on it (I no doubt much better than I!).


Gunnar Moody, 11, was handcuffed because, apparently, he was singing in gym class.  Gunnar is autistic, not that this should matter too much in this situation.  He is an 11 year old boy, in his gym class, singing a song, doing push-ups.  Now, granted, it's been a couple of years since I was in a physical education class, but I seem to remember it taking place in a gymnasium.  I also have some memory of those gymnasiums being rather loud, with bright lights, and noise reverberating in every direction.  I remember the smells and sounds.  The screech of shoes on the gym floor, the buzzing of the big, fluorescent bulbs above, and, yes, children making lots of noise.  Gym class, much like recess, is a time for children to move, let out their extra energy, and have fun.  It is the time you are able to let loose a bit, and certainly time to chat.  Heck, even time to sing.  Most days, our gym teachers would even play music for us during class.  

Well, perhaps I grew up in another time?  Maybe it was because I grew up on the other coast?  I have thought this over, and I cannot come up with any good reason why cops would be called in here, and certainly cannot fathom why handcuffs were used.  I can't help but feel with 100% conviction he was treated like this because he was in fact autistic, and no other reason.  So, it does matter, that Gunnar is autistic.  But, it shouldn't.  He should just be any other 11 year old, trying to pass the time as he does his sit-ups, by singing.  And no child, in this situation and all the facts as they've been presented to me, should be handcuffed for this.

Back to the autism factor.  Let's think back to my memories of gym class.  The noises, the smells, the physical action, the lights, it all comes together and anyone with experience with autism or sensory issues can easily see that gym class could be problematic.  The psychologists and other professionals I have spoken to have said that quite often recess, lunch, and gym class can be the more difficult time of day for autistic students.  This, I imagine, is common knowledge.  It doesn't seem like a hard idea to grasp.  Those three periods in the day are where social demands increase, as do the sensory assaults (the odors in the cafeteria, sights and sounds of the outdoor playground, and again the gym).  

This child had a behavior plan.  This behavior plan stated what steps the school staff should take in an event like this.  An event where Gunnar perhaps was having difficulty transitioning or stopping a behavior.  This behavior plan does not include the use of physical force.  Therefore, the school did not follow the plan set forth just for this situation, a plan agreed to by the school and Gunnar's parents.  This is frightening for any parent who has spent hours upon hours (and possibly many dollars for an advocate, etc.) researching and advocating, working with the school district, and then finally compromising on an agreeable IEP and behavior plan.  We sit in those meetings, hours on end often, and each member there signs the papers.  With handshakes and signatures, we all assume that we have sealed a deal.  That what we have written is THE final word on how our child will be treated during the time they are at school.  

This is another prime example of an autistic person not being afforded the same rights as any other individual.  Shame on the San Jose Unified School District.  They obviously are in need of an overhaul on their policy, how they observe IEP's and behavior plans, and certainly, how they handle situations like this, especially with autistic children.  This child says he does not want to return to school.  I feel for this family.  I think of my daughter, and her future.  It is stories like these that again tell me, we need to keep fighting.  Until society accepts our children, and works with us, autistic children will continue to be abused, continue to be handcuffed, and continue to be discriminated against.