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.

2/26/08

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

4 comments:

isles said...

This was very infomative and helpful! Thank you.

Mitomom said...

Before you "debunk" people who bring light to the tragic diagnosis of autism, I think you should learn a bit more about the ties between mito and autism and "autism-like" disorders and the triggers for mitochondrial decompositions. Yes, infections can trigger mito decompositions that can lead to autism, or an autism-like condition, but so can other things that negatively affect mitochondrial function, such as exposure to toxins (thimerosol from immunizations are one) and the immunizations themselves (especially live ones). My daughter's slide into autism was triggered by immunizations at age 12 months (very high fever, neurological issues).

Out of my mom's and my aunt's children (10 children), one has mild autistic symptoms. The one was triggered by an infantile infection that triggered a very high fever. Out of my mom's and my aunt's daughter's children (13 children), four are on the autism spectrum. What has happened between the two generations to so drastically increase the rate of autism? The huge increase in the immunization schedule and the earlier immunizations are given to babies. Do you work for one of the drug companies?

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