Chapter from the book
Recovering Autistic Children
Edited Stephen M. Edelson, Ph.D. and Bernard Rimland, Ph.D.

Hope Renewed

By Kelli Miller

Kelli Miller and her husband, Ron, live near Cincinnati, Ohio, with their daughter, Avery (who was born in May 1998), and their son, Austin. Avery, initially diagnosed with pervasive developmental disorder, now is re-diagnosed as having attention deficit disorder. This story was written in June 2002.

Introduction

“Prepare yourselves for a life of institutionalization.”

Those words were absolutely devastating to us as proud parents of a beautiful 22-month-old little girl. As we walked out of the Child Evaluation Center in Louisville, Kentucky our minds were racing. How in the world were we going to deal with this? How could this happen to us? What were our friends and family going to think?

Avery Hope Miller was born on May 14, 1998 in Louisville. My pregnancy was normal but was termed high-risk because of a history of multiple miscarriages. She was a healthy 9 lb., 3 oz. female with a full head of hair.

Avery's development was normal, and she hit all the typical milestones: she held her head up at six weeks, rolled over at 10 weeks, sat at five months, and walked at 12 months. The only thing we noticed that was unusual was that she loved “Veggie Tale” videos. We really didn't think a lot about it, passing it off as an “inherited” characteristic from her father since he can watch an Indy car race in the middle of a tornado and not even notice that the weather is less than perfect.

We were actually quite concerned about our 34-month-old son's speech development. The words he used to communicate were unclear, and we were concerned because he had experienced recurring ear infections. Our pediatrician recommended that a therapist come into our home to evaluate Austin for a developmental delay; she also recommended that Avery be evaluated at the same time.

When the therapist came to our house, Austin was evaluated first because we were very worried about his hearing. After a two-hour workup, which came back normal, it was Avery's turn. The therapist asked Avery to do several things—stack blocks, string beads, identify pictures—but Avery just wanted to spin the wheels on a toy car. She really had no interest in what this stranger had to say. We, of course, felt that Avery wasn't relating to her because she was a stranger, and that Avery just preferred the toys she was used to. After all, she was less than two years old.

The therapist's words would change our lives forever. She announced to us that Avery was exhibiting signs of PDD-NOS. She told me not to research it—it would only scare me to death. She referred us to the Child Evaluation Center in Louisville to confirm her suspicions. Of course, the first thing we did was go to the Internet and search for PDD-NOS. The search came back “See Autism.” The only thing we knew about autism was the movie “Rain Man.” Was that the way my child was going to be, like Rain Man? We later found out that PDD-NOS stood for “pervasive developmental disorder, not otherwise specified.” What did that mean? The more we read, the more confused we were. Our child did not injure herself. She did not cry all the time. She reacted quite normally to our showing of affection; as a matter of fact, she could not stand for her mother to be out of the room. We thought the diagnosis was obviously a mistake, but it would be confirmed later by the Child Evaluation Center. We also learned that PDD-NOS is on the “autism spectrum.”

Not My Child

The diagnosis of a child with a “lifelong disorder” is similar to the diagnosis of a child with a terminal disease, in terms of the grieving process that is involved. After the initial shock and anger, we decided that this was not going to happen to our child—she was going to recover. We would try every therapy, spend our last dime, and pour our whole existence into making her “normal.” The Child Evaluation Center recommended one hour of speech therapy and one hour of occupational therapy per week, so we hired a therapist to work with Avery four hours a week. After three months of absolutely no progress, we were at our wits' end.

It was April 2000, Autism Awareness Month. While I was channel surfing one day, a caption on C-SPAN caught my eye: “Autism and Childhood Vaccinations.” I had heard something about the MMR causing autism, but I never really thought that was credible. The U.S. government is here to protect our civil rights, protect our lives from harm — our government would never allow our children to be injected with something that could actually cause harm to them. C-SPAN was airing a Congressional hearing with parents testifying that their children were fine before their vaccinations, after which they were lost in the world of autism. The good news was that there was a doctor in Baton Rouge, Louisiana who was having success in helping children who were experiencing autism symptoms to become normal again. The next day, I made an appointment with Amy Holmes, M.D.

Dr. Holmes said that Avery acted a lot like her own son had at the same age. Upon reviewing test results, she found Avery had classic symptoms of heavy metal poisoning, specifically mercury. How could she have high mercury levels? We soon found out that the culprit was thimerosal. Thimerosal is a preservative used by pharmaceutical companies to make multiple-dose vaccinations. It has no use other than to allow these companies to package 10 doses to a vial rather than making individual-dose vials. Thimerosal is 49.6% ethyl mercury by weight, and in Avery's case it was injected into her body on day one of life through her hepatitis B vaccine, and then multiple times during her first year of life through other vaccines including the DTaP and HIB.

After further research, we discovered that by the time Avery was six months old, she had been given nine different vaccines with thimerosal, totaling 187.5 mcg of mercury. We compared the amount to the suggested safe limits for methyl mercury intake published by three federal agencies: the Environmental Protection Agency (EPA), the U.S. Food and Drug Administration (FDA), and the Agency for Toxic Substances and Disease Registry (ATSDR). Mercury intake through vaccination during the first six months of Avery's life exceeded the limit set by the EPA.¹

The Protocol

Dr. Holmes started Avery on a chelation regimen using the drug DMSA every four hours, seven days on, seven days off. The effectiveness of chelation was demonstrated when we viewed Avery's very first urine test. It showed a whopping 19 mcg of mercury dumped into her urine on her very first chelation trial (19 is at the far end of the “Very Elevated” column). This was proof to us that mercury was the reason for Avery's problems.

After three rounds of DMSA by itself, tests showed that her body was rid of loosely bound mercury, and it was now time to go after the tightly bound mercury that was located in the brain and other vital organs. To do that, Dr. Holmes prescribed alpha lipoic acid (ALA) to be given at the same time as the DMSA. At first we had the DMSA/ALA compounded into suppositories, but later we were able to give the combination orally. We did change her chelation schedule to three days on, 11 days off, dosing every eight hours. There is a lot of controversy about the dosing schedule, but Avery seemed to do equally well on either schedule. We stuck with the eight-hour schedule because it allowed all of us to get at least eight hours of sleep at night. Avery was on DMSA/ALA from November 2000 to February 2002. At that time, test results showed that her metals were in the normal range.

In addition to chelation, Avery has had 30 hours a week of applied behavior analysis therapy in our home. She has done exceptionally well with this therapy, and now has as much, if not more, academic knowledge than her peers.

Progress

Avery is now four years old, and has been re-diagnosed with ADD—she no longer qualifies for the diagnosis PDD-NOS. Avery still has a speech delay, but is talking in full sentences and asking questions. Her social skills are growing every day, but she still appears to others as a little shy. She does have little girl friends, and enjoys it when they get together to play. Avery has no self-stimulating behaviors. Nobody would ever know the original diagnosis unless they knew her history. We are confident that Avery will function normally in her world, and will be able to lead a normal life. We are so thankful to Dr. Holmes for her dedication to children on the autistic spectrum. Avery owes the quality of her life to her.

We are also thankful for the many friends and family who could do nothing but pray for our family. It has not been easy—what started out as a life with only brightness ahead was interrupted by darkness, but thanks to prayers and the dedication of Dr. Holmes, Avery is a beautiful, normal little girl with a bright life ahead of her.

Interesting facts (May 2002)

Only two single-antigen pediatric hepatitis B vaccines exist on the U.S. market: Engerix-B (GlaxoSmithKline) and Recombivax HB (Merck). Both contain thimerosal and 12.5 micrograms of mercury per 0.5 ml dose. The American Academy of Pediatrics pressed CDC to agree to a delay of the hepatitis B vaccination series, usually started at birth, for children born to hepatitis B surface antigen seronegative mothers. The Academy argued that the delay would be only temporary because both Merck and GlaxoSmithKline had promised that they could quickly shift manufacturing to thimerosal-free vaccine, perhaps in just a few months (the FDA had already promised to review applications for thimerosal-free hepatitis B vaccine within 30 days).

The FDA is moving in the pharmacological direction of “single-dose presentations of vaccines without preservatives,” said the FDA's Dr. William M. Egan at the Third Annual Conference on Vaccine Research in Washington, DC, May 4, 2000.²

Dr. Egan, acting director of the Center for Biological Evaluation and Research's office of Vaccines Research and Review, centered his talk on thimerosal, a common preservative in vaccines, including childhood vaccines. The American Academy of Pediatrics and the Public Health Service released a joint statement saying that the risks of not vaccinating far outweighed the potential risk of thimerosal. But the statement—as Dr. Egan pointed out—also recommended that thimerosal be removed from vaccines as soon as possible.

As of May 2000, it is possible to get the entire course of childhood vaccines without thimerosal, as several manufacturers have developed thimerosal-free vaccines.

References

¹Thimerosal and Neurotoxicity, written and overseen by Lewis Mehl-Madrona, Program Director, Continuum Center for Health and Healing, Beth Israel Hospital/Albert Einstein School of Medicine (www.Healing-Arts.org/children/index.htm).

²Washington, May 4, 2000 (Reuters Health). FDA endorses single virus vaccines without preservatives.

Update (March 2003):

Avery will be five years old in May 2003 and is fully integrated into her preschool classroom. She was re-evaluated in January 2003 and given the official diagnosis of ADD with expressive speech delay. Her speech is coming along very well. She is talking in sentences that are appropriate but somewhat immature. The important thing is that even though her speech is behind, she is developing now at a normal pace and at some point will catch up with others her age. We are convinced Avery will lead a normal life and are very thankful to the doctors in the Defeat Autism Now! movement who gave us hope and the courage to not give up on her.

Update for Second Edition (February 2006):

Avery is doing great! She is mainstreamed into Mason, Ohio, schools (one of the top public school systems in the U.S.) and in the second grade. She is a straight-A student and doing awesome. Her reading and writing are ahead of the second-grade schedule and she continues to amaze her teachers with her wit and charm.

She now is truly part of the peer group in her classroom. She is indistinguishable from her peers and very social. She is a cheerleader for her brother Austin's fourth-grade football team, the Comets, and has exceeded every expectation of her both in school and in a social setting. She is a blessing to everyone who comes in contact with her. We are truly proud of her and her accomplishments. There are many great things to come for Avery. We pray for your kids too!