Happy 9th Birthday to my Chandler

Have a great day my little burrito baby!

Alms for the Poor

UPDATE: THANK YOU MY WONDERFUL READERS! The goal was reached Saturday night! It totaled $1,151.15. Thank you so much for helping my little guy's recovery along! His birthday is this Friday and you guys have blessed him with a wonderful birthday present. Thank you for your love.

Now we can finally afford that surgery to get the Nerf Darts removed from his head.

As I am sure you can imagine, the social stigma has been terrible for him.  ;)

Original post:
I come to you to entreat you to give to the needy. Me.

We we finished a really productive round of HBOT for Chandler in Jan, and I wanted to start a new course of treatment in March only to come face to face with the fact that I have spent the last six months writing and not working, so the $$ is not there to start. I have not focused on monetizing the blog, which I probably need to do, or on making any of my writing pay in any way, which I probably also need to do. If for no other reason, so that I can do more of it. So I think that I will just to a little fundraising directly at my readers.

I want to raise $1,000. Not tax-deductable or anything. You are basically just giving me cash and saying, "thanks for neglecting your family's needs to write all this stuff that I wish I never needed to know in the first place.... have some money."

So if my writing has been of help or encouragement to you over the years, please consider dropping a little sumpin' sumpin' in the tip jar.

All proceeds go to my baby's brain and belly. And perhaps a Green & Black's Chocolate Bar with Almonds for mommy.

I was going to find one of those donation counters that had a little progress bar that goes to $1,000 or a thermometer or something, but I am to lazy. So no fun graphics.

I would ask Bill Gates for a scrap from his foundations 33.5 billion dollar table, but... well you know.

Oh... and if anyone wants to buy ad space, let me know.

Thanks in advance. I love my readers.

Words, Beautiful Words

Have not updated on Chandler's progress in a long time and it is long overdue.

So recently we started doing hard tank hyperbaric oxygen therapy with Harold Grams and we have been seeing some pretty big wows.

Chandler's progress had been really flat since last summer, kind of disheartening after all the gains he had made in previous years, and so we decided to give it a shot. We had tried soft tank HBOT a few years back, thought we saw some small gains, but it was the same month he had a huge lead exposure (did you know dirt is yummy) so if it was helping him, it may have been canceled out.

This has been quite a different experience. After the forth session, we started to see some really cool language. More words, more flowing language, less scripting, more jokes, more engagement... just more Chandler.

The first fun little wow happened on the way home. If we are out and he wants to go home, he says one of two things, "Mommy, do you want to go home now?" or "Go to 34 Maple Street?" He has done that for years. Imagine my happiness to hear, "Mom, how long until we get to Brunswick?" I didn't even know that he knew we lived in Brunswick!

Two days later when I went to pick him up from school, I get an email in the middle of the morning from his teacher at school. She has never emailed me in the middle of the day to tell me things, much less after school:

Ginger,

Something amazing happened with Chandler this morning. We were having morning meeting and the greeting was Buenos Dias. We usually just say good morning or hello to him. I don’t remember if we assumed another language would confuse him or if he was not responding. That’s what we have been doing all year. Anyway this morning when we came to Chandler he very appropriately said "Buenos Dias Holly" before Amy could even greet him. We were all so shocked, it was the coolest thing. James said, “He’s becoming more normal.” It was precious! He had also asked me earlier this morning, “Mrs. Williams, how do you spell Mrs. Williams? Thought you would want to know.

Jane

Gotta love James! When mom's crow about their children making big gains with biomedical intervention, sometimes they are written off as seeing what they want to see, teachers might just want to have high hopes for the child, but second grade boys are immune to treatment bias, especially when they don't know there is any treatment going on!

That afternoon his aid met me in the lobby of the school for the hand off and with tears in her eyes she gushed about Chandler's day.

"In music class he was perfect, he did everything he was instructed to do, was completely attentive and I didn't even have to repeat an instruction for him!" I've got to look up this... what is it called... hyperbaric?

We just met with his school team and everyone was telling stories about his new skills. They decided they wanted to hold off making plans for him for the summer and fall until the end of the year to see how far he goes with this.

It has only been upward from there. And have not seen any significant down side. He was a little hyperactive for the first two days, but that went away and it has been all good since. His great in the tank and the pressure has never bothered him.

We have had to take a bunch of breaks due to illness and broken cars and unfaxed prescriptions and life, but have started up again this week and hope to do another six sessions in a row and will see what happens. It is a thrill to see him making gains again.

Amazing that just giving the brain more oxygen can do this kind of healing. I will keep ya posted on how this goes.

Happy Birthday to my Beautiful Boy!

Happy 8th Birthday to my sweet, happy boy Chandler!




I love you forever!

Happy Birthday Chandler

Happy 7th birthday to my beautiful boy.



I love you Chandler P.

Best Christmas Ever

We didn't have to fight the crowds to go anywhere or clean the house for company. We had a little money this year and got to buy the boys things they wanted. We had a beautiful white New England Christmas, except that it was also sunny and bright.

But none of those reasons were the reason that it was the best Christmas ever.

It was the best because Chandler has fully joined us in Christmas this year.

"Who is dis present for"?
"Can I open it?"
"What's inside?"
"Its a... its a... LEGO INDIANA JONES"!
"COOL!"
"Awwwwww.... huuuuugggggssss".

"Wait... where's my Darth Maul light saber?! Gimme dat Webster!"

I remember when we had to sit him on our laps and do hand over hand to get him to unwrap a present, which he may or may not have had any interest in.

This year we had a big breakfast at the table, and he didn't try to leave, or crawl under the table, or stand in his chair. He read his Christmas cards out loud, took turns opening presents, showed off his gifts and took pictures of us. He decorated the tree with us and played Wii bowling and tennis and soccer and even Yoga with us.

He is just with us now.

I even dared to put three glass ornaments on the tree this year. I might even go out tomorrow and pick up some more on sale.

I will leave you with some of his photographs from today. I got the camera out to take pics of the kids, but I forgot to and Chan took over.





















Merry Christmas

1000 Posts

So this is my thousandth post on this blog.

I thought I would mark it by thanking all my readers who have been so encouraging to me over the last four years, and those who have challenged me as well.

And to thank Chandler for all the profound wonder that he has brought into my life.

I love you Chandler P.

SCDBakery.com for Thanksgiving

So last month we ordered some Halloween yummies for Chandler through the SCD Bakery, and my very picky eater baby gobbled them all up.

So for those of you who want to get some Thanksgiving yums for your little GFCF/SDC chickens, I highly recommend Jill's particular yums.

This was her email this week. Her menu rotates every week, you have to order for Thanksgiving by Nov. 13:

SCD Bakery
Dear Ginger,

Baking for Thanksgiving:
Apple Delight
Blueberry Delight
Pumpkin Bread
Pecan Apple Muffins
Banana Whoopie Pies
Apple Cinnamon Whoopie Pies

NOTE: The baking schedule for Thanksgiving will be a little different than usual with orders due Thursday Nov. 13th instead of Sunday and shipped to the West Coast on Monday Nov. 17th and the East Coast on Thursday Nov 20th to ensure delivery in time for the holiday. All menu items can be frozen.

Please note orders will close on Thursday at midnight, due to time limitations we will not be able to accept any orders placed after Thursday. :)
Orders due by Thursday November 13th.

WISHING EVERYONE A HAPPY THANKSGIVING !

Take Care,

Jill Rainville
SCD Bakery

Chandler's Chelation in the Local News

We were interviewed by a New Hampshire paper that ran two stories today.  One about our experience with chelation and the other about the NIMH Study.

Please note the superhuman cuteness of my baby.

Mother: 'We're not waiting for the government'

By ROBERT M. COOK bcook@fosters.com

Article Date: Sunday, July 27, 2008

Courtesy photo Chandler Taylor, 6, of Brunswick, Maine, gets biweekly chelation treatments at the Chelation Medical Center in Gray, Maine, to treat his autism.

Ginger Taylor wasn't sure what she could do to help her son, Chandler, when he first was diagnosed with autism spectrum disorder at age 2.

But after the Brunswick, Maine, woman discovered how much he benefited from chelation therapy, as well as a gluten- and casein-free and special carbohydrate diet, Taylor found the answer to her prayers.

She said her son, now 6, is well on the road to recovery.

Chandler receives biweekly, 15-minute intravenous treatments at the Chelation Medical Center in Gray, Maine, to remove lead, mercury and other toxic metals from his body. The treatments use a fluid containing agents that help remove the metals from the bloodstream. He also receives "Myers" cocktails to restore minerals and vitamins to his system, Taylor said.

The family's health insurance will not cover the procedure, the cocktail or special diet supplements. Taylor said they pay $300 weekly for everything, but the results have been worth it.

Courtesy photo Scott Taylor of Brunswick, Maine, plays with his son, Chandler, 6. Chandler was diagnosed with Autism Spectrum Disorder at age 2 and his parents said a combination of chelation treatment, a gluten-free and casein-free diet and a special carbohydrate diet have helped him develop better speech and learning skills.

"In the first two weeks he had dramatic improvement, and he started potty training. He has better eye contact, and his words took off," Taylor said. "He went from speaking four-word sentences to four sentences."

She said her son also started playing better with his older brother, Webster, 7, and her neighbor's children, who are the same age as Chandler. With the help of an aide, he also has attended kindergarten in the Brunswick public schools and she is hopeful he'll do well when he attends first grade this fall.

The National Institutes of Mental Health in Bethesda, Md., proposed doing a chelation treatment study earlier this month to determine how it helps children diagnosed with autism. If the study is approved, it would mark the first time the federal government has taken a close look at an alternative treatment for autism.

While Taylor said she's pleased the federal government wants to study the benefits of chelation as an autism treatment, she said the NIMH should have done so long ago.

"Parents have been reporting for years that it has been helping their kids," Taylor said.

She also said the danger associated with chelation has been exaggerated, calling it safe if administered properly by a doctor certified by a chelation board.

"We're not waiting for the government to do anything," she said.

Doctors with Defeat Autism Now!, or DAN, believe children with autism are unable to break down metals such as mercury and lead the same way normal developing children do because their immune systems are compromised.

They believe gluten- and casein-free diets, which don't use wheat and dairy products, and alternative treatments like chelation, can remove toxic metals from children and eventually let them function normally.

Taylor said her son benefited from the diet and chelation almost immediately after he started it in California, where the family lived before moving to Maine in 2006.

She said her son "started calling me mommy again for the first time in 10 months."

Unlike a standard blood test doctors use to detect high levels of lead and mercury, Taylor said a chelation test focuses on urine. In Chandler's case, his first chelation test showed he had high levels of lead and mercury, she said.

She said the family stopped chelation for nearly two years and had his urine tested again for metals after they moved to Maine. The test showed he again had elevated levels of mercury, lead and toxins, she said.

She said she believes her son may have ingested lead from mouthing toys later recalled for having lead paint. She said her son also may have ingested lead paint from the window frames of their Maine home.

She said she's not sure if her son will completely recover from autism, but believes chelation treatments have made a huge difference.

"We are going to keep doing it until all the metals are gone," she said.

New frontiers in autism research

By ROBERT M. COOK bcook@fosters.com

Article Date: Sunday, July 27, 2008

Dr. Patrick Mulcahy

Some advocates believe the federal government's willingness to study the benefits of chelation treatments may signal a turning point in the fight against autism.

"It's long past due," said Ginger Taylor of Brunswick, Maine, who has a 6-year-old son diagnosed with autism who has been receiving chelation treatments for more than a year. "Parents have been reporting for years that it has been helping their kids."

The proposed study is one of several recent developments that may shed new light on the causes of the neurological disorder, which affects one of every 150 children, according to the federal Centers for Disease Control and Prevention.

The CDC has said 25,000 children per year are diagnosed with autism spectrum disorders and the U.S. spends $35 billion yearly in federal dollars on related services, ranging from early education programs to adult services.

But advocates are not optimistic researchers at the National Institutes of Mental Health in Bethesda, Md., will end up producing a chelation treatment study of value unless they can approach it the right way.

Dr. Susan Swedo, who heads the federal institute's in-house autism research, is the principal NIHM investigator who wants to do the study, according to Joseph Carey, an NIHM spokesman. He said the study was put on hold for safety concerns after an animal study, published last year, linked DMSA, a chelating agent, to lasting brain problems in rats.

Swedo has proposed recruiting 120 autistic children ages 4 to 10 and giving half DMSA, a chelating agent, and the other half a placebo. The 12-week test would measure before and after blood mercury levels and autism symptoms. The study outline says failing to find a difference between the two groups would contradict reports that chelation works, according to NIHM officials.

Many parents, including Taylor, also have said they're hopeful the Hannah Poling case in March in Georgia will force the federal government to study the relationship between childhood vaccines and autism. Federal health officials conceded that vaccines may have contributed to Poling developing autism.

Poling, a 9-year-old girl, suffers from a condition that affects her mitochondria. Her parents filed a claim with the U.S. Department of Health and Human Services' Vaccines Compensation Program, saying childhood vaccines she received when she was 19 months old triggered her autism.

The government conceded in March that vaccines may have hurt Hannah and has agreed to pay her family for her care.

Advocates long have contended that the mercury preservative thimerosal, which has been used in vaccines, and the policy of administering several vaccinations in one shot to children at age 2 may be the trigger that causes children with a genetic predisposition to develop autism.

Nearly 5,000 families are seeking compensation because of autism or other developmental disabilities, citing vaccines and thimerosal, which has been banned by the U.S. Food and Drug Administration since 2001 except in certain flu shots.

Earlier this month, NIMH Director Dr. Thomas Insel said his group has proposed studying chelation, currently used by doctors to treat lead poisoning.

Last year, the National Institutes of Health spent less than 5 percent of its $127 million autism research budget on alternative therapies, Insel said. He said he is hopeful the chelation study will be approved. The federal government now spends a total of $300 million each year on all forms of autism research.

Dr. Patrick Mulcahy, a Kennebunk, Maine, osteopathic physician with the organization Defeat Autism Now!, or DAN, said he's pleased the government wants to do a study.

"Overall, it's showing that the government and organized medicine is starting to validate or question that there is some valid reasoning for doing these types of treatments," Mulcahy said.

DAN formed to raise private funding for autism research, including on alternative therapies such as chelation, citing low federal spending.

Mulcahy does not offer chelation treatments, but does prescribe methyl-B-12 shots every three days to help children with autism rid their bodies of metals. He also prescribes gluten- and casein-free diets.

"I actually think the diet would be more of a fruitful study," he said.

Nationwide, at least three deaths, including one of an autistic child, resulted from improper chelation treatments, according to the CDC.

Meanwhile, researchers continue to find new genetic clues about autism's cause.

Earlier this month, Dr. Christopher Walsh and Dr. Eric Morrow of Harvard University searched for genes and mutations associated with autism in 88 families from the Middle East, Turkey and Pakistan in which cousins married and had children with autism. They studied families in which parents share ancestry because the strategy increases the chance of finding inherited genes.

The researchers reported in the July 11 issue of "Science" that they linked several gene mutations to autism. The largest group of implicated genes are involved in changes in synapses — the areas between neurons in the brain — that underlie learning. Such genes are vital to the developing brain.

"Autism symptoms emerge at an age when the developing brain is refining the connections between neurons in response to a child's experience," Walsh said.

Other NIMH funded research includes the Autism Genetic Resource Exchange, a project initiated by the Cure Autism Now Foundation. Genetic samples are being collected from several hundred families with more than one member who has been diagnosed with autism so scientists can learn more about the genes that hinder brain development.

The Autism Tissue Program has received funding from the Harvard Brain and Tissue Resource Center, the NIMH and the National Institute of Neurological Disorders and Stroke. Researchers can study post-mortem brain tissue with imaging methods.

All of those research projects involve gene-mapping, which has been the federal government's preferred track to understanding autism.

Dr. Stephen Edelson, director of the Autism Research Institute in San Diego, Calif., said the fact that the federal government even wants to study chelation could signify a turning point.

He said doctors with the American Academy of Pediatrics now are having extensive dialogue with DAN! doctors about the benefits of gluten- and casein-free diets and other treatments.

Edelson said potential research breakthroughs will happen when the medical community, federal government and autism advocacy groups come together and pool their resources. He compared such an effort to how Americans worked together at home and abroad to achieve a singular goal to win World War II.

He said he's optimistic continued public pressure from the growing number of parents with children diagnosed with autism will lead to serious studies about the relationship between childhood vaccines and the disorder.

"More is happening, but not enough," Edelson said.

Our Children Change Us

Paul's tribute to his son:

"And all the roads we have to walk are winding
And all the lights that lead us there are blinding
There are many things that I would
Like to say to you
But I don’t know how
Because maybe
You’re gonna be the one that saves me
And after all
You’re my wonderwall

-Wonderwall by Noel Gallagher

Wonderwall is a lyrically fantastic, hauntingly sung song. I’m sure the lyrics above resonate with many people and for differing reasons.


When I hear Wonderwall on the radio I think of the current journey I’m on and the most influential person in shaping my life.

And all the roads we have to walk are winding
And all the lights that lead us there are blinding

I never signed up for having an autistic child. I thought I signed up for a straight line path through life. Obviously, that isn’t the case. Lacking control and knowledge of the future has rocked me to the core, but has provided a real kick in the pants wake up call to live life. The unknown brings exciting potential, but also has anxiety riddled possibilities. I need to accept the unknown and do my best in the now to help my son. The now matters, the future will take care of itself.

There are many things that I would
Like to say to you
But I don’t know how

No single person has taught me more about life than my son. I don’t know if many 7 year olds hold this type of impact on their fathers. He has taught me (or maybe more correctly exposed my shortcomings) about faith, unconditional love, responsibility, critical thinking, friendship and patience. He holds the sweetest spirit and beautifully pure naive view of life.

It is doubtful that I’ll ever be able to adequately express my feelings to my son. I’m not sure how much understanding he will have about this part of his life or what lies ahead for him going forward. I have to accept doing my best for him and trying to minimize my failings of him.

Because maybe
You’re gonna be the one that saves me
And after all
You’re my wonderwall"

Best Mother's Day Present Ever

This Mother's Day, from my boys, I got two hydrangea bushes to start a little garden on the side of my house. I named them Bessie and Myrtle.

But my best mothers day present was being introduced to some chickens.

Today after church we decided to drive around and explore Maine. We drove by a farm and noticed that three chickens had crossed the street and were hanging out next to the primary school. We pulled up to them to show them to the boys. Chandler rolled down his window to greet the hens.

"Hewwo Chickens. How are you? My name is Chanwer. These are my friends, Webster, Mommy and Daddy".

That is the biggest mouthful my little guy has ever been inspired to say.

I love those damn chickens.

Pervasive Developmental Disorder – Almost Specified

So this week I got the best phone call ever.

Chandler is currently going through reevaluation by the school psychologist Dr. Guy, as I will call him, as it had been three years since his last formal evaluation and the state believes it is time. Dr. Guy did the testing over a few days and in the middle, called me to check in and ask some questions and see what kind of things I wanted him to look for while he was at work on my boy.

We talked for a while and he described what he had seen so far. (I usually don’t tell that I have a background in mental health or that we are doing biomed or anything of much at all so as not to contaminate the process.) I could tell that he had gotten a pretty good handle on who Chandler was (you can always tell who ‘gets’ your kid and who doesn’t) and I asked him for a few specific things that might help me gauge his long term progress over the years.

Then this part of the conversation happened:

Dr. Guy: Well your son is autistic, but he doesn't have autism.

Me: Explain that to me.

Dr. Guy: Well there is another diagnosis called Pervasive Developmental Disorder-Not Otherwise Specified that... blah blah blah... (I have no idea what he said after that because my heart jumped into the air and I was trying not to burst into tears on the phone)

Me: So you think he has PDD?

Dr. Guy: Yes. While he has problems with speech and receptive language and socialization, I don't see any of the behavioral issues, stims, problems with transitions... blah blah blah... again could not hear him because all I could think was, "Did he really just say that? Don't get too excited because he might not really have said that."

Me: So if you walked into the class room and didn't know he had ever had any diagnosis, you would pick him out as a child with PDD?

Dr. Guy: (Now being very nice and trying to explain to me in very basic terms because clearly I was not understanding him as I kept asking him the same simple question over and over). Yes. Have you been in the autism class and gotten a chance to see some of the other children? They are very different from Chandler, much lower functioning. Have you noticed how they do things like _________? That is more of what true autism looks like.

Me: BAAAWWWAAAAAWWWWWWW!!!!!

Dr. Guy: Ma'am?

I explained that when we started with Chandler, he didn’t make eye contact or answer to his name, and that he was a stimming machine, flapping and spinning and toe walking and walking in positions that I could not do and hold my balance and turning the big wheel upside down to spin the tires and spinning the hot wheels car tires and watching the spinning fans. Chandler’s first eval, which was 6 months after we started therapy and biomed and after he was making eye contact and answering to his name, put him at moderate to severe autism.

Then he understood why I was so emotional.

When I asked about what specific stims he was seeing, he replied that he hadn’t seen any at that point. I told him that he still had one significant one, but I didn't tell him what it was, so see if he could see it as he continued the eval.

He never saw it, and then I realized that I had not seen it in a while either.

Chandler’s last SIB was that when he gets too frustrated, or even too frenzied (sometimes our spontaneous dance parties in Mommy’s office get a little crazy) he bites down on the first two fingers on his right hand. Really hard. His little fingers have big welts on them and I can always tell what kind of a day he has had when he was not with me by looking at his fingers to see how swollen they were.

I had not checked them in a while (he just has not been getting that upset lately), and when I looked at them, they were almost completely healed! The welts are gone, the callouses are gone and the skin is soft. It looks like it has been many weeks since he has bitten himself.

Gone, Gone, Gone!!

“Ginger, does your son have any self-injurious behavior?”

“Why, no. He does not do that any more. That was so 2007. Now his two fingers are virtually indistinguishable from their peers”.

I wanted to write about this right away, but thought better of it as the poor man had not even finished the testing, which turned out to be wise because, after talking with Chandler’s teacher, she pointed out a few subtle stims that he still has (damn that woman, if she wasn’t so “perceptive” and “right” and such a “great teacher” and so “completely invested in my child”, I would give her a piece of my mind, boy howdy).

Dr. Guy (also impressed with him as he calls families on his weekends to work on their kids assessments, who does that?) settled on a formal diagnosis of:

299.0 Autistic Disorder (Rule Out Pervasive Developmental Disorder, Not Otherwise Specified)
315.32 Mixed Receptive-Expressive Language Disorder.

He also did an intelligence assessment that showed, big surprise, a 40 point gap between verbal and non-verbal IQ.

He also noted that Chandler had no significant behavioral issues. So now we are down to just dealing with the talking part.

So I know this isn’t formally loosing his diagnosis yet, but I am still really excited about it because his first impression was that he didn’t have ‘autism’ and because three years ago the psychologist who tried to do an IQ assessment gave up because Chandler would not interact with him.

I am going to stay on top of this and when the last few little behavioral quirks are gone, and he firmly moves into PDD land, with the approval and agreement of his crack team of specialists, I will shout it from the top of someplace very, very high.

So stay tuned.

Now let’s all take a minute to look at my beautiful baby:



At chelation last week Webster went to take Chandler to get a sticker out of the sticker bucket while I talked to the doctor. Apparently we talked too long because Webster gave Chandler 46 stickers. A bullet could not have penetrated that shield of stickers.

The American Academy of Pediatrics to Work With Defeat Autism Now in Treating Autistic Children!

This a day I have long been praying for! I cannot express the joy that I have right now!

After years of lip service someone finally did something real!

This is not the end of the war, but it is D-Day invasion. I think it will be marked as the day that changed the direction of the autism epidemic.

Now that the AAP has given their members permission to explore these treatments that are working so well, they are going to get see first hand and be a part of the joy that happens when a little piece of a sick child returns.

I think that I am almost as excited for the pediatricians as I am for the autism community!

If any pediatrician any where, at any time, wants to know anything about my son's story, his regression, his diagnosis, his symptoms, his vaccine reaction, his treatment, his recovery, what worked and what hasn't, what we want to try, what research I have read, ANYTHING, from conception to what happened just now... I will be THRILLED to share with you!

If you are a doc reading this... and you want to start finding out about biomedical treatment, start here:



When my son was diagnosed at age two, he had lost all speech except for two words, neither of which were 'mommy' or 'daddy', and lost all eye contact.

Last Sunday in church, after 4 years worth of medical interventions, he held the door for me for the first time and said, "Here mom, I'll open the door for you"!

And for any docs that are looking for something to do this weekend, come to the DAN! conference in Cherry Hill, NJ on Friday!

UPDATE: April 14th, 2008
AAP has removed one of the paragraph from their press release. Evidence of an internal struggle? The removed paragraph is in bold below.

AMERICAN ACADEMY OF PEDIATRICS RECOGNIZES WORLD AUTISM DAY

For release: APRIL 1, 2008

AAP media contacts: Susan Stevens Martin Debbie Linchesky
847-434-7131 847-434-7084
ssmartin@aap.org dlinchesky@aap.org

CHICAGO – The American Academy of Pediatrics (AAP) supports World Autism Day (April 2) as a way to bring together groups that are committed to finding the causes of, and successful treatments for Autism Spectrum Disorders, which now affect an estimated 1 in 150 children in the United States. Thousands of children, parents and families are coping with what can be a devastating diagnosis with lifelong consequences.

Pediatricians care for children with autism and their families every day. They are passionate advocates on behalf of these families and recognize that autism is a significant challenge to the health of the nation’s children. Pediatricians emphasize that early diagnosis is critical. The AAP promotes regular screening for autism at the appropriate well-child visits, as well as treatments tailored to meet the needs of an individual child. In 2007, the AAP published the Autism Toolkit, which includes clinical guidance to help pediatricians identify and manage children with autism, to refer them to therapeutic services, and to provide parents with information and resources. The AAP also offers a host of resources for parents on its Web site, www.aap.org.

“We know many parents are searching for answers,” said AAP President Renee R. Jenkins, MD, FAAP. “The AAP has supported research into the causes of autism and will continue to do so.” Pediatrics, the Academy’s peer-reviewed, scientific journal, has included dozens of studies on the associated factors, management and impact of Autism Spectrum Disorders.

The AAP recognizes the best way to address the needs of children with autism and children overall is through a partnership among pediatricians, parents and researchers. The AAP has met with leaders of advocacy groups, such as Autism Speaks and the Autism Society of America, which include parents of children with autism. Most recently, the AAP met with representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism. All advocates for these children agree that further research is needed regarding causes as well as safe and effective treatment.

“We are pleased the AAP reached out recently to Defeat Autism Now! in order to better understand the treatments and interventions that we have found beneficial to children with autism,” said Stan Kurtz, executive council member of Defeat Autism Now! “We are full of hope that this is the beginning of a thoughtful partnership that will further explore factors that might cause or contribute to autism, as well as examine safe and effective treatment approaches for families coping with this condition.”

[removed paragraph:]
“Autism is a challenge for pediatricians, their patients and families. By working together, we stand the best chance of helping these children to realize their full potential,” Dr. Jenkins said. “The Academy is committed to working with researchers and treatment groups like Defeat Autism Now! to get closer to finding answers to the multiple causes of autism and determining effective therapies.”

For more information about autism, visit www.aap.org.

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.

The Autism Research Institute (ARI) is a non-profit organization established in 1967 that fosters scientific research on autism triggers as well as diagnostic, treatment, and prevention methods. Through its Defeat Autism Now! program, ARI provides research-based information to parents, clinicians, and researchers worldwide, through its Web site (autism.com), call center, parent groups, conferences, science-based publications, and think tanks. (Press Contact: Autism Research Institute; email: lisa@autism.com)

Today Was A Very Good Day

On this journey, there are milestones that we wait a long time for and that are huge deals for us when they happen.

The first time Chandler made eye contact, the first time he answered to his name, when he started calling us 'mommy' and 'daddy' (again), the first time he said 'I love you', the day he started potty training and the day (yet to come) when he will be completely potty trained).

Today was one of those days. Chandler learned to swallow pills!

For four years I have been trying every which way to get into his little body all the supplements that he needs, hiding this in a spoonful of that and putting these in those drinks, and longing for the day that I could actually just hand him the darn zinc capsule and a glass of water and know that it will all go into his little belly.

I have tried a couple of times a year for the last few years, and he has not been on board. For the first couple of years he just thought it was funny and didn't get it. For the last year or so he just said a firm, "No." and ran away.

Tonight we tired again, and the credit goes to his big brother Webster who showed him over and over how cool it was and convinced him to give it a real try. Chandler tried three times and couldn't get it down, but kept trying! And on the fourth try, he did it! Then he took two more!

Then he exclaimed, "Excellent!"

I don't know if there has ever been a day that I have actually be able to get all of the supplements down that he needed, but now a new day is dawning! I am gonna try to get some better probiotics in him now that he can swallow pills.

Praise the Lord! This is a very good day!

UPDATE: Well day two did not go so well, but he did try several times and the precedent has been set. Pray for my little guy that he would get to be a champ at this. Just pray for him in general. He is such a great kid.

Happy Easter Mainers!

A welcome to my fellow statesmen who are visiting for the first time after reading their local news paper! Come on in and take a look around. Drop me an email and say hi!

While you are here, let me invite you to join me and lots of other autism families on April 18th at the Falmouth Memorial Library at 5 Lunt Road in Falmouth, Maine from 7:00-9:00PM for the World Premier Screening of "Autism Yesterday". See the stories of children who have recovered from autism via the biomedical intervention that is working so well for my son Chandler (he has not recovered yet, but he is halfway home to us!).

I understand that four autism doctors will be on hand, so if you ever wanted to investigate ways to improve your autistic child's health and functioning, (or just meet other families that are) this is the chance. For more information contact: Laura Plourde: 829-3474 or mlplourde@verizon.net

Check out the trailer:

This week, check back in, I will be posting lots of recovery stories and updating everyone on how Chandler is progressing during chelation (hint: great!)

Thanks for visiting!

Web Gives Autism a Global Stage

Thanks to Josie Huang at the Portland Press Herald:

Web Gives Autism a Global Stage
by Josie Huang
Portland Press Herald

Earlier this month, major news broke in the autism world when the federal government conceded that vaccines worsened a health condition in a Georgia girl named Hannah Poling and triggered autism-like symptoms.

Federal officials, while agreeing to pay for her care, maintained that vaccines do not cause autism, a developmental disorder. Still, the case was seen as a victory by a subset of parents certain of a direct link. And they could learn everything they wanted to know about it from Ginger Taylor, a Brunswick woman with an autistic son.

Search for "Hannah Poling" on the Internet, and Taylor's blog www. AdventuresinAutism.com will pop up as the first or second search result. In the days after the case became public, readers from around the world converged on the site, with daily visits climbing from about 350 to 1,700, she said. Her lengthy posts prompted some readers to comment online. Even more e-mailed her.

"The Internet is a great tool for all the debate you can have," said Taylor, who also blogs about medical studies and treatments for her 6-year-old son, Chandler. "I don't know what they did before it."

Taylor is part of a group of Maine parents who are using the Internet to share information on an international stage and create a community around a disorder that is as isolating as it is mysterious in its cause.

The thirst for knowledge is growing as more children are diagnosed with autism. About 1 in 150 children have autism or a closely related disorder such as Asperger's syndrome, estimated the federal Centers for Disease Control and Prevention.

Hallmark symptoms include repetitive behaviors and problems socializing, speaking and reasoning. The degree of severity varies, as does the need for educational and social services.

Answers and support

In Maine, diagnoses among school-age children have more than tripled annually since 2000. Cases among people ages 3 to 21 rose from 594 that year to 1,990 in 2007, according to state education officials.

Similar rate increases have been posted nationally. It's not clear whether autism is becoming more prevalent or whether awareness has grown.

Looking for answers and support, dozens of Maine parents are using blogs, Yahoo! groups, YouTube, listservs and social networking sites such as MySpace to share their experiences with other families in their state and beyond.

At least 15 of them are members on FoggyRock.com, a site founded by Shannon and Steve Johnson of Harpswell, whose older child, Wynn, is autistic.

FoggyRock -- a reference to the uphill climb autism poses -- acts like a FaceBook for members of the autism community. Each member has a home page for posting blog entries, photos, videos and "wit and wisdom." They also can add "contacts" and join groups such as The Autism Sibs and Military Families with Autism.

Shannon Johnson, FoggyRock's editor-in-chief, has her own page, where she writes about the joys of raising 13-year-old Wynn -- like "seeing a genuine smile on his face"-- and the heartbreak of separation. Wynn spent about a year in the hospital, returning in December.

The site has attracted nearly 700 members, some from places as distant as England and Australia, Johnson said. She wants it to be a comforting place for families whose lives change dramatically the moment their child is diagnosed with autism.

Often, one spouse will leave a career to care for the child, as Johnson, a former teacher, did. Many will throw themselves into researching and trying different behavioral therapies, diets and supplements.

For some, family outings, never mind vacations, become a thing of the past.

"I hear from members all the time that they're so isolated," Johnson said. "You can't participate in life the same way you did. When the kids are younger, and they're having behavioral issues, it looks typical. When they're older like my son, and he's having a meltdown, people are afraid."

A Lifeline

For families in more remote areas, where they know of no other people in their situation, the Internet can serve as a lifeline, said Cathy Dionne, program director of the Autism Society of Maine. She said this is especially true in a lightly populated state like Maine.

"A lot of families especially in rural Maine -- we're talking Aroostook County, Washington County -- their connection is their computer," Dionne said.

Dionne, who has an autistic teenager, regularly visits the sites and feels uplifted after reading posts. Though her child does not speak, she is still hopeful for the day she will hear an "I love you."

"The one thing I like about these sites is the 'Guess what my child did today?'" Dionne said. "They share of lot of those type of stories, and I think parents need that inspiration."

Some of the parents say that they feed off one another's advice and encouragement because they feel the medical establishment has abandoned them.

Unlike a condition such as juvenile diabetes, autism comes with less defined guidelines for treatment, parents say.

"When you go to the pediatrician, they say 'there is no cure. Put him in speech therapy. Bye,'" said Taylor, a family therapist before she switched to Web design so she could stay at home with her son. "You're not left with a lot of options."

Taylor belongs to the group of parents who believe autism can be cured in some children. Many blame the mercury-containing preservative in vaccines given to children through the 1990s for causing the disorder, as well as environmental toxins.

On the other end of the spectrum are parents who believe that autism is largely, if not entirely, genetic. Some of them consider the view that autism can be "fixed" as a direct affront to their children.

The Maine-based Web sites and online groups reflect the range of views. Rebecca Waddell of Waldoboro said she falls somewhere in the middle of the pack.

For her blog, www.mainely musings.blogspot.com, Waddell said, she stays away from controversies and topical issues, except for the occasional mention of actress Jenny McCarthy, the parent-turned-activist who's acquired hero status on many autism sites.

Waddell prefers to document her day-to-day experiences with her two sons, the younger of whom, 4-year-old Thane, is autistic. Her site is plastered with close-ups of her sons mugging for the camera and videos of them goofing off with their father and the family husky.

Waddell, who regularly reads four other Maine-based sites, said it is therapeutic to have an online journal and receive feedback from readers.

"I sort of would like people to realize that it's not all horrible," she said. "Yes, there are some challenges. He'll go into a store and scream the whole time. But he can be also incredibly cute and charming and smart."

The rest of the world can see for themselves. Just the other week, she said, another mother in Sweden let her know how adorable Thane is.

Happy 6th Birthday Chandler!

Happy Birthday to my beautiful boy.







He a very special guy who has an almost supernatural ability to inspire.
I am so grateful that he is mine.

Best Summer Ever: An Update on Chandler’s Progress

I have been away from blogging for the last two months because we spent the summer focusing on getting our boy better. And hell yeah is he better!

After a break from chelation of more than a year, we tested him to find that his lead levels were through the roof. Our DAN doc was alarmed and he recommended that we go straight to IV Calcium EDTA chelation (CaEDTA).

Previously, I had wanted to remain cautious and used the much slower method of oral DMSA, but seeing the results that Chandler had from just 10 sessions this summer, I could not regret my decision more. I wish I had done this for him three years ago.

(So much has been made of the accidental death of the autistic child in PA who was mistakenly given the wrong form of the drug, Na2EDTA, while undergoing chelation for lead, and I wanted to take a moment to link to the CDC’s review of three chelation deaths. These tragedies were medical accidents and not the result of the administration of CaEDTA which is the standard and safe treatment for children with lead poisoning.)

His results have been wonderful. Cautioning, he is still autistic, but his speech is really starting to flow, his eye contact has shot up, he is connecting with the kids in the neighborhood, he is beginning to make little jokes, and get my little jokes, and – miracle of miracles – hold on to your butt – HE IS POTTY TRAINING!!!

The change in him over the first five sessions were the most dramatic. Our neighbors, whom we have been close friends with since before the kids were born, and whose kids play with our kids practically daily, went away for two weeks at the beginning of his IV chelation. We had not told them what we were doing. When they came back, their family was outside with my husband and Chandler. After about 20 minutes I came out and the mom said to me, “What is up with Chandler, he is acting like a different kid?” I told her about the chelation and she said that it was like we had adopted a new child.

His lead levels are still rising, and he still has mercury tucked in there behind the lead (chelators bind to lead first and you have to clear it before you can get the mercury out adequately), so we will be doing this for a while. After a month long break, we will be starting up again and I will give more frequent updates on his progress.

But for now, I wanted to share with everyone our wonderful news of our beautiful boy’s progress.

Thank you to all of the encouragement that so many have given us over the years.

Mommy

Chandler just brought this in to me.



Just wanted to share.

Thomas Trains Poison Our Children

I am completely beside myself.

Chandler has been full of lead since he was two. We have been chelating him on and off, but still there is lead. Saw his doc today and got his test from last week. Looke. Lead.

Then I came home to this:

http://www.cpsc.gov/cpscpub/prerel/prhtml07/07212.html



Well sweet Chandler has spent the last 4 or so years with a Thomas train in one hand and another in his mouth.

Every autistic, toxin vulnerable boy anywhere has had one of these trains in his pocket since he had a pocket to put them in.

This is horrible. Who the hell decides to put lead paint on toddlers toys?