Saying Hello to a Child With Special Needs by Robert Naseef, Ph.D.

Saying Hello to a Child With Special Needs by Robert Naseef, Ph.D.

Finding out that your child has autism (or any other disability) can
be an extremely dark day for parents. This is tough news to
swallow. You don't have to kid yourself or those who love you about
how hard this can be. It may seem like life as you have known it
stops in its tracks. Yet the love you have for your child makes
giving up unthinkable. It will take time to regain your balance.
This involves endurance, courage, and accepting whatever remains
unchangeable.

The diagnosis is the beginning of your journey. As your child gets
the appropriate therapies, you will see progress and you will feel
relief because now you know what to do to help. While it can be
painful to say good bye to the child of your dreams, you can say
hello now to the child who needs you just as much if not more. You
will find great joy and great love in each and every achievement
that you would have taken for granted had your child had a "typical"
developmental course.

There are times when I still wonder who my son might have been,
without the autism, and who might I have been as well. Sometimes it
seems like only yesterday when I held Tariq for the first time, and
yet it is over 25 years. Magically he made me a father. Visions of
playing baseball and building model airplanes together and having a
warm, close relationship danced in my mind. It still warms my heart
when I recall how his life flowed through those first 18 months.

Everything changed when the "autism bomb" hit and he stopped talking
and began an endless sequence of repetitive activities. The impact
sent his development and family life veering sharply from the course
we were on. That I would lose my perfect baby was beyond anything I
could fathom. It is so much easier to tell this story in
hindsight.

I thought I could change him and make him the boy I wanted him to
be, frantically following various treatment approaches. Despite
intensive treatment, he did not make dramatic progress. Instead he
has been a catalyst to transform me, and help me to become the man I
needed to be. He taught me the meaning of unconditional love--to
honor his sacred right to be loved for who he is, not what he has
achieved lately, how he looks or how much money he will earn.
Without words, he continues to teach me a priceless lesson and
continues to inform and inspire my work as a psychologist with
families and children. He made me a better father and a better man.

As a psychologist, I take great joy in seeing parents fall in love
with their child all over again in ways they could have never
imagined. First, I try to help people look at their grief. It
doesn't help to pretend to be positive when underneath you may be
lonely, afraid, or sad. I learned we don't have to lie to
ourselves. You can grieve. You can complain. You can mourn. This
helps you to go on, make the best of the situation, and enjoy your
child and your life. Our life force is resilient, but the longing
for the healthy child or a typical existence may endure. You have to
learn to live with that yearning. As you do that step by step, you
are saying hello to the rest of your life and to your child's unique
personaility and development.

Thank you for that gift, Tariq.

Low-Dose Naltrexone (LDN) Treatment for ASD

Low-Dose Naltrexone (LDN) Treatment for ASD



by Jaquelyn McCandless, M.D.





Thanks to DAN! doctor Jaquelyn McCandless, author of “Children with Starving
Brains,” for providing this report on a very promising new treatment.



Naltrexone is an FDA-approved drug used as an opiate antagonist for treating
opiate drug and alcohol addiction since the 1970s, available in generic form as
well as in the brand name ReVia in 50mg tablets. At regular dosing to treat
addiction, usually 50mg to 150mg a day, it blocks the euphoric response to
opiate drugs such as heroin or morphine as well as alcohol.

Opioids are known to operate as cytokines, the principal communication signalers
of the immune system, creating immunomodulatory effects through opioid receptors
on immune cells. A popular immune classification method is referred to as the
Th1/Th2 balance: Th1 cells promote cell-mediated immunity, while Th2 cells
induce humoral immunity. Simplistically, the inability to respond adequately
with a Th1 response can result in chronic infection and cancer; an overactive
Th2 response can contribute to allergies and various syndromes and play a role
in autoimmune disease, which most autism spectrum children show on immune
testing. The November 13, 2003 issue of the New England Journal of Medicine
notes: “Preclinical evidence indicates overwhelmingly that opioids alter the
development, differentiation, and function of immune cells, and that both innate
and adaptive systems are affected.” An Italian study done in 1996 by Scifo and
Marchetti attempted to correlate immunological determinations and behavioral
performance in treatment with naltrexone in 10, 20, and 30mg doses in autistic
children, with significant reduction of autistic symptoms noted in 7 out of 12
children. The behavioral improvement was accompanied by alterations in the
distribution of the major lymphocyte subsets, with significant increase in
normalization of the CD4/CD8 (T1) ratio and an inverse ratio of changes in NK
cell activity to plasma beta-endorphin levels. A large body of research in the
last two decades has pointed repeatedly to our endogenous opioid secretions as
playing the central role in the beneficial orchestration of the immune system.

Bernard Bihari, MD, a New York physician studying the immune responses in AIDs
patients, discovered that a very low dose of naltrexone, approximately one-tenth
the usual dosage, boosts the immune system and helps fight diseases
characterized by inadequate immune function. The temporary inhibition of brain
endorphins when given a very tiny dose of naltrexone apparently results in a
reactive increase in the production of endorphins, tending to normalize the
immune system with this elevation, and accomplishes its results with virtually
no side effects or toxicity; naltrexone is considered very safe and has never
been reported as being addicting. When LDN is given between 9 p.m. and midnight,
the body attempts to overcome the opioid block and the endorphins rise, to stay
elevated throughout the next 18 hours. Studies in human cancer patients show
that LDN acts to increase natural killer cells and other healthy immune
defenses, and hundreds of multiple sclerosis patients have totally halted
progression of their disease for up to 8-10 years or more with regular use of
this medication. Restoration of the body’s normal production of endorphins in
those with cancer or autoimmune diseases is the major therapeutic action of LDN,
which needs to be given only once a day between 9pm and 1-2am.

The use of LDN for children with autism spectrum disorders was previously
studied in the 1990s, with researchers using from 5 to 50mg daily or every other
day. In these trials, researchers were looking for opioid antagonism. Panksepp,
Shattock and other researchers noted better results with low doses; studies on
higher doses were more equivocal in children, and non-compliance due to the
bitterness of the drug posed a problem for children who could not swallow
capsules.







For my private clinical studies, Dr. Tyrus Smith at Coastal Compounding created
a very effective transdermal cream. This allowed easy adjustment of dosing (some
of the smaller kids did better with only 1-1/2mg), the bitter taste was no
problem, and the cream could be put on the children’s bodies while they slept.
The cream is put into syringes, with ½ cc providing 3mg for children or 4.5mg
for adults; most adults prefer capsules; both are equally effective.

I completed a preliminary eight-week informal study on 15 of my autism patients
May-June 2006 applying 3mg of LDN transdermally between 9 and 12 p.m. Several
adults participated also, one with Crohn’s Disease and one with Chronic Fatigue
Syndrome using 4.5mg nightly. Parents and participating adults reported weekly
on the results of the treatment.

Eight of the 15 children in this study had positive responses, with five of
these eight having results considered quite phenomenal according to their
parents. The primary positive responses have been in the area of mood,
cognition, language, and socialization. Two small children responded better when
changed to 1-1/2mg dosing. No allergic reactions were noted, and the primary
negative side effect was insomnia and earlier awakening, usually fairly
short-lived. The two adults in the study had very positive responses, with the
Crohn’s participant reporting that she has been in remission since starting LDN
(almost 10 months at this writing).

All of the children in my study were on well-controlled dietary restriction. I
have received reports from the e-lists I monitor of about 5-10% of other
children (not my patients) having side effects such as irritability, agitation,
and restlessness, subsiding as soon as the drug is withdrawn. I queried these
parents about gluten/casein/soy in the children’s diets, as this response is
very likely indicative of withdrawal symptoms of opioid block even though brief.
I suspect that children on a strict GF/CF/SF diet are less apt to show this
response; this has yet to be tested.

The immediate positive mood/cognitive/relating effects seen in many children
starting this intervention is unlikely to be from immune enhancement showing up
so quickly. For other autoimmune studies using LDN, the evidence is that the
optimum immune response can take four to six months. In private correspondence
with earlier autism researchers Drs. Panksepp and Shattock, they postulated that
the LDN therapeutic effect with the rebound of endogenous opioids in the brain
“loosens up” the opioid social-reward systems so children who were not
connecting to the many known opioid based social rewards in the environment
begin to respond to those rewards. Both these researchers emphasized the
importance of positive social reactions being reinforced and enhanced
substantially by social support and encouragement, helping the new behavior
become part of positive behavior modification. A significant proportion of
children upon starting LDN show not only some increased hyperactivity and sleep
changes, but a bout of what seems like “viral activation” in the form of a cold,
fever blister, and other infections. These are usually short-lived, followed by
a burst of improved language, cognition, and socially seeking behavior. Now,
instead of immediately lowering the dose, I am asking parents to use the full
dosage, which seems to cut down this time of adjustment for most of the
children. Some do need to go down in dosage, but I urge parents to try to stay
the course if possible as I suspect the maximum immune benefits occur with full
dose, whereas the immediate social-reward and cheerfulness effects occur on
ultra-tiny doses.

As an effective, non-toxic, non-addicting, and inexpensive behavioral and
immunomodulating intervention, LDN is joining our biomedical arsenal to help
more and more children recover from autism as well as helping anyone with
autoimmune diseases and cancer. As an FDA approved medication, it must be
prescribed and must also be compounded for the tiny dosing required.



Note: I am currently conducting a clinical study aimed at not only ASD
children but their parents, as it is well known that autoimmunity has a strong
genetic component. 80 adults and 26 children are in this 16 week study. Dr.
Vojdani at Immunosciences Labs helped me work out an extensive immune panel for
determining what LDN will do to important immune and autoimmune markers along
with weekly tracking of behavior, mood, and physiological functions. Results of
this study will be reported by June 2006. For more information, see
www.lowdosenaltrexone.org or join Autism_LDN@yahoogroups.com.

Jack will start Hyperbaric Oxygen Treatments in April...

Tuesday, January 17, 2006

By JESSICA ADLER
HERALD NEWS



To Andrew Piccirillo, the hyperbaric oxygen chamber seems like a spaceship. To his parents, the see-through, bed-sized capsule at Paterson's Barnert Hospital seems like a new bit of hope.

Hyperbaric oxygen therapy (HBOT), which exposes a patient to increased atmospheric pressure and 100 percent oxygen-filled air (as opposed to the 20 percent we breathe in the environment), is typically used for people with chronic wounds, infections or gas poisonings. Most recently, HBOT made headlines when it was used to treat a West Virginia coal miner who suffered carbon monoxide poisoning.

Andrew, who is 10 years old, is autistic. His parents are giving HBOT a try – even though no studies have been done on the effectiveness of HBOT in treating autism; even though insurance doesn't cover the 90-minute, $200 HBOT "dives" for the treatment of autism; even though virtually every doctor who doesn't make money administering the treatment to autistic children is skeptical about using it for such patients.

"This happens often in the autism world -- something comes out and parents flock to it," said Paul A. Potito, executive director for the Center for Outreach and Services for the Autism Community (COSAC). "Parents are willing to try lots of things because the disease is so devastating."

The Piccirillos aren't blind to that phenomenon. Like other families battling autism, a cognitive disorder that impairs social and learning abilities to varying degrees, the Piccirillos face the daily reality of an emotionally and, at times, physically exhausting illness. They will, they say, try almost anything to make it better. That includes treatments -- chelation therapy, which allows for the release of heavy metal in a patient's urine and hormone treatment with Secretin -- viewed with great skepticism by the mainstream medical community.

"When you're faced with a disability like autism, where there is no F.D.A.-approved treatment for it; you're faced with trying all different things you think might work," says Andy Piccirillo, Andrew's dad. "I don't think (HBOT) is the cure, but I think everything we've done collectively has brought Andrew from a non-verbal state to being a kid that goes to school and participates in the classroom and is learning and has friends."

The Piccirillos heard about HBOT from a friend, another parent of an autistic child. It had done wonders for her 7-year-old son, she told them. After almost 40 HBOT sessions, the mother said, he was making more eye contact. His concentration had improved. His temper was better.

On Web sites for parents of autistic children, Piccirillo found similar accounts. At www.healing-arts.org, a Web site advocating holistic medicine, he found a study purporting to show that HBOT had effectively treated childhood encephalitis, or swelling of the brain: "Viral encephalitis," it said, "presents a model for the inflammation that may be part of autism."

But, many doctors warn, it's not a good idea to rely on "may be's."

"If there is a treatment for autism, the approach would probably depend on the underlying problem, and we don't know what the cause of autism is," said Dr. Jonathan Mink, associate professor of neurology and pediatrics and chief of child neurology at the University of Rochester. "There is little or no evidence that hyperbaric oxygen is helpful for established brain injury."

His skepticism is widely echoed.

"As far as what exactly it does in brain, based on everything we know about autism, I do not believe (HBOT) could possibly help," said Dr. Leonid Topper, a pediatric neurologist with Pediatric Neurology Associates in Morristown.

"It's like the old tonics out west that were good for rheumatoid arthritis, the liver and the kidney," said Ronald Jacobson, an associate clinical professor of neurology and pediatrics at New York Medical College and a pediatric neurologist with Pediatric Neurological Associates in Englewood. "When a treatment is proposed to be good for many, many conditions, people should be wary."

While doctors are skeptical of HBOT and point out that it can cause seizures and oxygen toxicity in a limited number of patients, most are mindful of the plight parents of autistic children face. Although he doesn't recommend HBOT, Jacobsen says, "I'm very sympathetic to patients trying anything, because there are not a lot of treatments that work."

While researching HBOT, Andy Piccirillo read accounts from those offering the therapy that boasted of its potential.

"Think of it like a charge not firing," said Geoffrey Saft, a chiropractor who administers HBOT to about three autistic children per day in his Corte Madera, Calif., office. "What we believe happens in hyperbaric therapy -- in the brain and nervous system -- is that it causes idle synapses that are not working right, to get going again."

Saft charges $80 per session, relatively little compared to the $100 to $900 charged at the approximately 300 centers offering hyperbaric therapy around the country. The more treatments a patient has, the more lasting its effects, Saft maintains, adding that those effects can include increased attention span and improved socialization. Eighty percent of his autistic patients, he says, experience some improvement.

"His language skills jumped -- really jumped -- and he's picking up more phrases and vocabulary," said Nancy, the parent who originally referred the Piccirillos to HBOT, of her son's improvement following more than 40 intermittent sessions. Nancy, who lives in didn't want her last name printed, since her son is so high-functioning that some don't know of his diagnosis, she said.

But skeptical doctors such as Mink call experiences like Nancy's "the placebo effect."

"We all know that a good expectation leads to a temporary perception of improvement," Mink said.

Piccirillo is used to such skepticism. Even though he knows HBOT isn't scientifically proven to be effective, Nancy's account provides hope.

"We have to be realistic judges of each therapy on our own," he said. "There is nothing proven, but if one out of 10 kids benefit from it, that's a good thing."

When the Piccarillos found out that HBOT was available 10 minutes from their Wayne home, at Barnert Hospital, they signed Andrew up for 10 sessions over two weeks. Last week, the little boy burst into the hospital room full of energy, carrying a DVD of "Buzz Lightyear," one of his favorites, and repeatedly quoting memorized excerpts of the book "The Three Little Pigs."

The redundant speech patterns and hyperactivity are two behaviors the Piccirillos hope will be helped by the HBOT.

When it was finally time to get into the oxygen chamber, "the magic schoolbus," as Andrew calls it, the boy laid calmly as he watched his movie.

At this point, Andrew is about halfway through his morning sessions, which will cost a total of $2,000 -- $150 per "dive," plus a $50 doctor's fee. The Piccirillos remain hopeful that they'll see some of the improvement described by their friend Nancy. If they notice any positive changes in Andrew's behavior, they'll continue the treatments in spurts.

Andy Piccirillo, an accountant, and his wife, a teacher, believe their insurance company will reverse its decision not to cover the HBOT for their son. Even if they have to pay out of pocket, though, they say they'll find a way to fund any treatment they think works, including HBOT.

"As parents, you do anything you can to make your child's life better," Piccirillo said. "We won't give up on him."

Reach Jessica Adler at (973) 569-7169 or adler@northjersey.com

Michael Karas/Herald News

Andrew Piccirillo, 10, talks with his dad, Andy, during a "dive" in the hyperbaric oxygen chamber. Though many doctors question its effectiveness, for parents of autistic children, the chance it might help makes the treatment worth its high cost.

Vaccine Dilemma!!!

This letter went to Rep. Rush Holt today - I think it tells the story...


I'm writing to make you aware of a situation that I'm dealing with concerning my 5 1/2 year old autistic son Jack. My wife and I have determined that my son should enter the public school system, after 3 1/2 years of homeschooling. He has been placed in an appropriate setting within our own district, at the Marlboro Early Learning Center. The district however has vaccine requirements. Jack is lacking his final MMR, and DPT boosters. At the recommendation of his physician, Jack was given a titer to prove immunity rather than a final booster vaccine. The logic behind the titer rather than the vaccine, is that Jack is being treated for an underlying auto-immune deficiency, which may indeed be directly connected to his autism. The physician's thought is that the introduction of any viral component into his system could be dangerous. I've described Jack in the past as "toxic" because he can't fight viruses or naturally eliminate metals such as lead or mercury. Jack's titers have come back and have shown full immunity, however the school system is not accepting the titers and is insisting on vaccines. All in all, the local school nurse, following protocol, is overruling Jack's personal physician.

Our only hope in the eyes of the school is to receive a religious exemption from vaccines. It seems that while I may be able to get a religious exemption, I can't get a medical exemption. Does that seem logical? Having fully vaccinated my other 2 children, I don't think I can suddenly adopt religion as a cause, instead I'd prefer for the medical community to support the health of my child.

Have we reached a stage where the vaccine dictums are overriding common medical sense? We're just a vaccine happy culture! Unless you say you don't believe in them based on religion of course...

Thank you for continuing to raise awareness of the epidemic of autism and thank you for your time.

Matt Mester

Dan Olmsted Article - My Child is Toxic

Mr. Olmsted of UPI has spent the past year investigating the world of autism. Most notably he has raised awareness that the un-vaccinated Amish community is Autism free!. In this article, you might recognize a name :-)

I'll post more of this series and try to get the whole thing on the website.

United Press International�-�The Washington Times, America's Newspaper

The Age of Autism: 'My child is toxic'
By Dan Olmsted
UPI Senior Health Editor
Oct. 12, 2005 at 1:42PM
This column receives a welcome avalanche of correspondence, but our recent discussion of autism as a "whole-body illness" has generated more e-mail and faster than any other topic we've considered.
The mail comes mostly in three varieties -- parents telling their own tales of battling multiple illnesses and disorders in their autistic children; describing what they believe to be significant improvement through biomedical approaches; and venting anger at pediatricians for failing to see the disorder the way they do.
Matt Mester of Morganville, N.J., neatly summed up those aspects: "My child is toxic and needs to be detoxified." Here is his letter.
--
As a father of a 5 1/2-year-old boy diagnosed with autism at age 2, I have followed your series very closely.
My son also exhibits a series of biomedical problems that are completely out of the ordinary compared to my other 2 children (both neuro-typical), not to mention my wife and myself. Jack is virtually non-verbal and would be classified as severe, although thankfully Jack is not self-destructive and he is a happy boy.
He cannot tolerate dairy or soy, has had chronic constipation since infancy, and has terrible seasonal allergies. Like too many other children, Jack has regressive autism, which became apparent at approximately 18 months of age when he lost his language as well as his interest in the world.
Thankfully, the medical science field has progressed since he was first diagnosed 3 years ago, and we are seeing our first bit of significant improvement in Jack since we started Methyl B-12 shots and glutathione treatments this past summer.
In addition, a very recent blood test has revealed an underlying metabolic problem that will apparently need to be addressed -- we are still awaiting detailed results of a series of tests to lead us in the right medical direction.
I'd like to specifically comment on a statement published in your most recent article, quoting a parent: "Autism is a disease that affects the immune, GI and central nervous system." I honestly disagree with this opinion and offer the opposite conclusion.
In my humble opinion, there is no such thing as autism. Autism is a series of symptoms caused by one of a number of underlying medical issues -- most highly related to metabolic or detoxification problems. These problems are more than likely genetic, yet triggered by an environmental cause.
I believe that each child needs to be individually diagnosed and tested, as autism is a very personal disease, therefore studying and revealing as many possible treatment paths is the right thing to do. There is no cure-all, rather there are a number of paths that must be followed until you find the right one. And unfortunately, all of the paths have yet to be identified.
While I'm not certain that thimerosal (a mercury-based vaccine preservative) or mercury caused my son's symptoms to appear, I'm becoming more and more certain that my child is, for lack of a better word, toxic, and needs to be detoxified. His improvement with B-12 and glutathione is proving it to me once and for all.
--
Here is another representative letter, from Mr. and Mrs. Lawrence Haite of Kingston, Mass.
--
We are certain there are medical issues at the forefront of our ten-year-old son's autism. Sadly, they were missed by mainstream doctors for most of his early years. When we received his diagnosis there were no blood tests, screenings or medical work-ups. Most simply advised therapeutic services which in turn had to be obtained through adversarial means with our school district.
As we watched our son physically decline and had our concerns dismissed time and time again, my husband and I often thought of just driving to the emergency room of a major hospital in Boston and refusing to leave until we had answers.
Instead in 2001, I wrote the exact same letter to my son's physician, his neurologist and a doctor whom I had never met, but heard was having success treating children on the spectrum. The letter outlined all our concerns regarding ear infections, frequent antibiotic use, a multiple-vaccination schedule, suspected food intolerances, eczema-type skin rashes, pale skin coloring, the inability to tan or burn, imbalance of bowel ecology, poor protein digestion, chronic diarrhea followed by episodes of constipation, and malabsorption issues.
Further, our son presented with no protective antibody to Hepatitis B and elevated titers to measles. He also had nutritional and metabolic deficiencies as well as elevated HHV-6 and heavy metal toxicity. We did not receive any response from the aforementioned pediatrician and neurologist.
Thankfully, the physician we never met, Dr. Jacquelyn McCandless, responded to our request. She reviewed his entire medical history from birth and validated most if not all of our concerns. She recommended further testing and proposed treatment protocols that was the first real medical attention our son ever received. Improvements followed and we continue to address these issues today.
We parents have every reason to be angry with the AAP (American Academy of Pediatrics), but frankly we don't have time for that, because of the intense commitment to help our son. It is a double tragedy ... not only in what we believe to be the root cause of our son's autism (thimerosal/vaccine additive connection) but the way we were treated along the way.
Initially, we completely stepped up to our parental roles and did not wallow in "How did this happen?" but rather "How do we help?" The AAP did not. Ironically, it was only until we did the work to understand "how this happened" that we could truly help our son.
We struggle daily to work with and celebrate gains made ... but perhaps our son's treatment and outcome potential would be far less challenging had our concerns not been dismissed early on.
--
Last, here is a letter that suggests why a sense of urgency and openness is so desperately needed in dealing with a disorder that the CDC says afflicts 1 in 166 American kids. We withheld the name.
--
My son is 7 years old and I'm concerned about his future as an autistic adult. A little at a time I'm beginning to realize that his autistic behaviors are not changing that much, and that as he grows, he's becoming a larger body with the same behaviors.
I saw (ABC TV's) "Nightline" the other night and, for the first time, saw an autistic adult. There is no information out there on the subjects of teen years and adult years, and what to expect for elderly years for autistic children. I cannot bear the thought of my son in a mental institution just to have a place to live when he grows old.
For now, we've started a trust fund for him so that maybe when he becomes old enough, he'll have money to have someone take care of him when we're gone. Is this the right thing to do? What else do I need to do?
--
Readers who have a constructive response to this father are invited to offer it via this column. E-mail: dolmsted@upi.com

Jack Goes to School!!!

On January 18th, Jack started Kindergarten at the Marlboro Early Learning Center in Marlboro, NJ. He was placed in the self-contained classroom for Autistic children, where he is one of 7 students. Each student in his class has a 1 - 1 aide. Jack is in the midst of transitioning his programming to the classroom, and his home based therapist Melissa is going to school with Jack for 3 hours each day to help Jack's new teacher and aides get up to speed on Jack's programs and Jack's style.

So far, Jack seems to really love school. He appears happy and motivated and we are very hopeful that this will be a great way for Jack to learn!

In Jack's 5 1/4 hour day at school he gets discrete trial therapy plus speech and occupational therapy, along with all of the daily group activities with his classmates. As we expected, Music is Jack's favorite activity so far!

Mom fights autism and suspected link

Well, we've started this treatment with Jack... let's all hope.


Mom fights autism and suspected link
BY CHRIS LAFORTUNE
STAFF WRITER

It's hard to guess now that Charlie Blakey is autistic.

At home in Oak Park with his mother, Charlie willingly posed for photos and offered up a sticker collage featuring Superman.

There was a time, his mother Christina Blakey said, that her son would not talk to other people. His speech development was delayed, moreso than it is now.

"Nobody could understand him except us," she said.

Charlie would throw up any food he ate, she said, and his muscle development was slow.

"He did not walk until he was 2," his mother said.

He would often have problems making transitions. His mother said he would scream and kick while she dressed him to go to school in the mornings. She would have to get to the building early because it was so bad.

"Five minutes after I left, he was fine," she said. "It was the transition of it that he had a problem with."

Charlie would run for hours at a time, flapping his arms and tensing his body. The Blakeys tried to redirect his energy, but couldn't.

Blakey has tried just about every therapy available, she said. Only the most recent, a combination of a change in diet, B12 vitamin shots and a controversial therapy for autism - chelation - has brought about a change in his behavior.

"He's made strides we never thought possible six months ago, even," Blakey said.

Blakey believes her son developed autism as the result of exposure to thimerosal, a mercury-containing preservative that was used in vaccines. According to the Centers for Disease Control, there have been no harmful affects reported from thimerosal at doses used in vaccines, except for redness and swelling at injection areas.

Because of her son, Blakey has become involved on the national level, advocating on autism and against thimerosal in vaccinations. She attended a rally in Washington, D.C., July 20 over a vacation with her husband, meeting with staff from Sen. Dick Durbin and Barack Obama.

Charlie is higher functioning, Blakey said, so she has the ability to lobby Congress. Not all parents with autistic children are so fortunate.

"As long as Charlie is sick, I have a sense of urgency to get him well," she said.

In July 1999, the Public Health Service agencies, the American Academy of Pediatrics and vaccine manufacturers agreed thimerosal should be reduced or eliminated as a precaution in vaccines.

Today, the CDC says, with the exception of some flu vaccines, no vaccines used in the United States to protect preschool children against infectious diseases contain thimerosal as a preservative.

Blakey has tried to get her son's medical records from when he was as baby, but has only a partial list of precisely which vaccines he recieved. But she believes her son, born in 1999, received a dose of mercury 80 times what is deemed safe.

Blakey said she was initially skeptical of a link between mercury and her son's condition. hypothesis at first. Charlie was autistic in infancy, though he was not diagnosed until age 3. He never regressed into autism, she said, a sign others have attributed to thimerosal.

"We were taking him to different therapies three times a week," Blakey said. "Things got slowly worse. I saw that the gap was growing wider between him and his peers."

But as she did research on mercury poisoning, she discovered some of its symptoms were similar to her son's.

Blakey first changed her son's diet to cut out dairy and wheat, starting in May 2004. In December 2004, Blakey started giving him B12 vitamin shots and started chelation, which draws metals and minerals from the body. Two weeks later, she said, her son stopped throwing tantrums during transitions.

"We're talking remarkable gains that our neighbors have seen, his teachers have seen and skeptical family members have seen," Blakey said.

Chelation is a controversial therapy for children with autism. One reason is that there has been no proof that thimerosal has any connection to autism, said Dr. Chris Johnson, co-chairwoman of the American Academy of Pediatrics' autism expert panel.

Chelation also has side effects, Johnson said. The therapy typically is used for people who have lead poisoning, she said.

"There are some studies that have shown some fairly significant side effects, such as actually increasing neurological symptoms and reducing IQ when chelation is used in lead," Johnson said. "That is one of the risks you have to take when the child is toxic."

Johnson said no certified lab has been able to prove toxic levels of mercury in children with autism. That's not to say they don't have any at all.

"I bet if I'm tested or you're tested, we are all going to have some degree of mercury," she said. "It's in the air. It's with us."

The doctors who promote this therapy would calculate mercury levels as if children were given vaccinations with thimerosal all at once, Johnson said, but those vaccinations are typically spread out.

"I know that people are using it, but there are not studies at all, no scientific studies, that have studied whether or not this helps," Johnson said.

Doctors want to help people, Blakey said, which is why they go into medicine. They have an interest in seeing people stay healthy.

"It's beyond their own comprehension to be able to see that something they could have been contributing to is partially responsible for such a medical catastrophe," Blakey said.

Everyone Blakey said she has talked to has had positive results with chelation therapy, and Blakey has seen them, herself.

Just that morning, Blakey's son had been on a play date with a neighbor. In the past, he would never initiate play with anyone. He has also learned his letters and their sounds and is now starting to read some three letter words, though his language development is still delayed.

There was a time when Blakey's son didn't know a letter past A.

"For him to be able to read is amazing," Blakey said.

Blakey has her son's blood tested every few months to make sure Charlie's liver isn't being damaged. She also has a metabolic profile done.

To replace the metals and minerals that her son's body needs, Blakey has Charlie take a multi-mineral supplement, as well as calcium, magnesium and selenium.

Chris LaFortune can be reached at clafortune@pioneerlocal.com.