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As seen in
By Krista Vance
In the first year of their life, Jack and Jamie were beautiful and growing
perfect. Jamie was walking, had wonderful words, and was very agile and coordinated. However, after a traumatic illness, Jamie slipped away from us, falling into a place called Autism. This is the story of how we got him back.
Six failed pregnancies and many other complications later we were led to
the alternative of in-vitro fertilization. The reward of that tedious process was a beautiful, perfect set of twins. Born seven weeks early, Jamie and Jack graced our world on December 15, 1997.
At one year of age Jamie was hospitalized with a viral turned bacterial
infection. The infection caused his throat to swell, and he was on a ventilator for 7 days. When he was 8 months old he had been diagnosed with Tracheo/laryngomalacia. So his throat had already been slightly swollen, making it easier to close his airway. Jamie was on two very strong medications upon leaving the hospital, Prilosec and Propulsid (Two commonly used drugs). Ten long days in the intensive care we were glad to be back home.
Jamie had complications from the drugs. One was that his hair fell out.
The Gastroenterologist and the pulmonary doctors urged me to continue Jamie on the medication. Our naturopathic Dr. had looked up side effects of the Prilosec in the PDR (Physician’s Desk Reference). He discovered that hair loss was one of the side effects with the Prilosec. I spoke with my pediatrician also and he advised me to take him off the medication. Witch is what I did.
On December 31, 1999, the FDA announced that the use of Cicipride
had been associated with 341 reports of heart rhythm
abnormalities including 80 reports of deaths. This drug was taken off the
market not long after Jamie stopped taking it.
A couple of months went by and Jamie’s hair began to grow back, but I
noticed changes in him. One afternoon I was looking at Jamie sitting in the family room and I tried to get his attention by calling to him, but got no response. I called to him again, but still with no response. I looked at him. He was playing with an airplane, making it go around and around. He kept doing this over and over. I walked over to him, got on my knees next to him and spoke his name, but still there was no response. I put my hands underneath his shoulders and pulled him onto my knees and looked into his eyes. The sparkle had left his eyes. It was as if he didn’t know who I was. It seemed as if he was looking right through me. I knew at that moment that Jamie was no longer the Jamie I brought into this world. My adrenaline immediately kicked in strong. I knew there was something wrong and I needed help.
In the following days and weeks his coordination began to decrease and
I would catch Jamie staring off into space as if he didn’t know that things were going on around him. His physical motions became very repetitive. His expressions became silent and he no longer spoke. He never pointed at anything, while his brother Jack spent his days pointing to the things he wanted. Every loud noise around him sent him into panic -- simple things like the sound of a blender. He wouldn’t even let his dad pick him up. The only person he would let hold him was me. My son was living in a world that I could not enter and I needed help getting in, so I turned to our pediatrician.
The “A” Word
During our visit to our family pediatrician, we discussed some of the
changes I had seen in Jamie. Due to the history that Dr. Rubin had with our family, he was aware of all of Jamie’s health issues. This time he noticed a very different boy. He did a complete physical exam and the room remained quiet as he did his series of tests.
“I don’t want to alarm you but I think he has the ‘A-word’,” he said to
“What?” I kind of laughed, confused by his carefully phrased message. “I think Jamie is autistic.” The only understanding I had of that word was from Dustin Hoffman’s
character in the movie Rainman
. I wasn’t sure what it really meant. Dr. Rubin told me he had two other patients who are autistic. He gave me information on several people to help diagnose this problem. He gave me the names of two
speech therapists and told me to check at the JFK Center in Denver for a psychologist who specializes in diagnosing autism. He also told me that the mothers of his other autistic patients had not received a very optimistic response when they went looking for help for their children. He explained that to his knowledge, at this time there is no cure. I was devastated and felt incredibly overwhelmed by this task.
Figuring It Out
I left Dr. Rubin’s office highly motivated to figure it out. I began calling,
reading, researching anywhere I could. I learned that trauma could be a possible cause of children slipping into autism. Clearly, all the breathing problems Jamie had experienced, along with the intensive medications he had ingested, had taken their toll on him, but I knew I couldn’t let him go through life with autism and I was willing to do anything to get him well.
Our goal became to surround ourselves with people who could focus
on the etiology and solution of the problem, not on gathering evidence to label it. Once we knew the cause, we could find the solution. I knew that Jamie had been fine before the trauma with his breathing and deep down I just knew he could be healed.
We started vitamin therapy right away. I started the boys on a very strict
diet. I always chose organic foods to keep the load of chemicals and pesticides low on their bodies. I was lucky to have a mom that taught me at a young age about eating healthfully.
Through various articles I learned the detrimental role that metals have
on the body and brain function. When I read about the “Rh factor”, my mind was swirling with thoughts of my B-negative blood, the thimerosal, and my son with autism. The light went on! I knew this was an important link to my son and would be an integral step on the road to my son’s recovery. Fifty to eighty percent of autistic children have mothers with Rh-negative blood. Mothers with Rh-negative blood typically get RhoGAM (Immune Globulin Injection) shots while they are pregnant. Until the end of 2001, RhoGAM shots contained the preservative thimerosal. Thimerosal is a preservative that has been used in some vaccines since the 1930’s. It is 49.6% mercury by weight and is metabolized or degraded into ethyl mercury and thiosalicylate. RhoGAM, also known as HypRho–D, is used to reduce problems that can arise when an Rh–negative woman becomes pregnant. A mother receiving an average dose of RhoGAM would take in about 10.5 micrograms of mercury. The EPA safe limit for mercury exposure is .1 micrograms per kilo per day. Mothers who hemorrhaged early in pregnancy would receive multiple doses
and a much larger mercury intake. High levels of mercury can permanently damage the brain and kidneys, resulting in tremors, memory and vision problems. Mercury in a mother’s body can be passed to her fetus. According to a recent Environmental Protection Agency (EPA) report, mercury accumulates in the umbilical cord blood at a level that is 1.7 times higher than that in the blood of the mother. I had six lost pregnancies and received six RhoGAM shots, including two more during my pregnancy with Jack and Jamie. At this point, I realized that it would be important to rid Jamie and myself of the mercury toxicity.
Through additional research, I discovered the Autism Research Institute
in San Diego, California founded by Dr. Bernard Rimland. They faxed me a list of the doctors in my area who specialize in the treatment of autism. There were only a few doctors listed, but one doctor stood out among the rest. His name is Dr. Terry Grossman. He is an MD specializing in Chelation Therapy. I thought to myself before I received the fax, if I could find a doctor who does Chelation Therapy, he’d have a lot of knowledge on detoxification of the body
. When I got the fax and I saw Dr. Grossman’s name, I was excited to learn that he helped children with autism. I called his office immediately.
It seemed that each direction we went uncovered different leads that
kept us discovering better options and alternatives. Another direction I wanted to go was getting more information on the Son-Rise Program in Massachusetts. I had read the special issue article on autism in a magazine that explained many alternative therapies in dealing with autism. I was determined to try every single one of them.
After learning more about the program by phone, they recommended I
read the book, Son Rise, The Miracle Continues
by Barry Neil Kaufman. After reading this book, I was completely taken by this family and awestruck by their amazing pioneering spirit in healing their son. They gave me the inner power to do the same with Jamie.
We decided to take a trip back east to Massachusetts to the headquarters
of the Son-Rise Program. It was a wonderful trip. The Son-Rise program taught us how to come into Jamie’s world instead of being frustrated that he wasn’t in ours. We learned to celebrate the place he was in by using principles centered on consistent and unconditional love and acceptance.
Jamie’s way of communicating was to scream to get the things that he
wanted. Our new philosophy required the patience to slow down the communication, de-escalating the process, while training Jamie to communicate to the best of his ability. This meant that I could no longer just give him what he wanted. I needed to help him calm down. I had to talk at half-speed in order to convey calmness. For example, if he wanted some almonds, he would scream. I wouldn’t immediately give him almonds, instead, I would first ask
what he wanted by pointing to an orange and say, “orange”, then to an apple and say, “apple”. Once we got to the almonds, he was more focused and calm listening to my slow voice. I could tell a difference immediately in Jamie’s attitude. This really worked.
We continued to seek various avenues for treatment, intending to try the
procedures that promised the most progress. Dr. Bernard Rimland of the Autism Research Institute advised to use of Super Nu-Thera in combination with other supplements through Kirkman Laboratories. Jamie did well with some and not with others. It was a process of trial and error.
The next major advancement for us came after we started working with
Dr. Terry Grossman. Our first visit was very eventful, just getting Jamie through the door took several minutes. Finally getting him into a treatment room, Jamie’s behavior was almost uncontrollable. He was climbing the walls and refused to be touched by Dr. Grossman; however, despite Jamie’s lack of cooperation, Dr. Grossman’s staff took hair, urine, blood, and stool samples for analysis. Dr. Grossman provided another verification of Jamie’s condition calling it “Autistic Spectrum Disorder.” He began taking different measures and enforcing certain practices for us, one of which was to continue withholding dairy (casein) and wheat (gluten) from Jamie’s diet. I also learned more about the connection of harmful metals to autism. These metals came from various things, including vaccinations, RhoGAM shots given to Rh-negative mothers, environment, antibiotics, and medications. Chelation Therapy has been used effectively to detoxify lead poisoning. The testing, not surprisingly, revealed that Jamie had high counts (and some levels were off the charts) of many metals. The odd thing was that the mercury level was the only one that didn’t show high. I thought the mercury has got to be in there; it must be hiding
. Dr. Grossman’s protocol also included putting Jamie on a supplement called “Captomer,” a supplement that helps pull metals from the body. This began our treatments using these strong supplements with Jamie.
I learned about the Great Plains Laboratory headed by William Shaw.
Dr. Grossman was very supportive of my desires for additional testing through blood, urine, and stool with this specific laboratory.
At the Great Plains Laboratory, Jamie had these additional tests. This
analysis revealed an elevated level of yeast, mold, and bacteria in Jamie’s body. This was definitely a source of Jamie’s ongoing gastrointestinal problems. Around this time I learned that the intestines influence 80% of the brain’s functioning, so this was obviously an area that required attention. In order to
address the very high yeast levels, Jamie began to take Niastatin along with intestinal flora, which was ordered by Dr. Grossman.
Up to this point, Jamie had taken an ambulance ride every month
because of his trouble breathing. Each time he was given recimic epinephrine and Decadron, a steroid used to open up his airways, as well as antibiotics. This steroid, along with the antibiotics, had impacted his body chemistry and added to the abundance of yeast. Because of Jamie’s medical past, his body had been more open to absorbing everything, contributing to his leaky gut syndrome.
Something Is Working
Through my new connections, I discovered Dr. Gary Klepper, D.C.
N.D., another alternative health provider from Colorado. Dr. Klepper functioned as a monitor of the products Jamie was taking. Between Dr. Klepper and Dr. Grossman, we had a comfortable checks-and-balances system. All the different products, such as Wobenzyme, Primal Defense, and many other brands of probiotics, were working to heal Jamie’s gut. While his intestinal tract was receiving what it needed, his brain was being treated with high doses of Vitamin A, Omega 3, and other essential oils. We continued to add and take away amounts of different products as we identified Jamie’s needs and the product’s effectiveness. We began to see significant improvement in Jamie. I had to be very creative in ways to have Jamie able to take the supplements. Now they have lots of liquid supplements making it a little easier for children to take.
I decided we needed to get away from the cold and the snow for a
winter and chose to spend it in my hometown of Santa Barbara, California.
Through my closest friend, Beth, in Santa Barbara, I got the name of a
homeopathic doctor, Luc Maes, N.D. D.C. At that point Jamie was still waking up six to ten times a night, screaming at the top of his lungs. Dr. Maes directed me in several ways. One way was to take soy out of his diet because he had a constant runny nose. This was an important change. His continuous cold and allergy like symptoms went away almost immediately after removing the soy. We worked with Dr. Maes several times for very long appointments. We spent the time explaining Jamie’s behaviors and his sleeping patterns. He gave us two homeopathic remedies that had no change effect on Jamie. The third one, which Dr. Maes worked diligently to figure out, was “Stramonium.” After Jamie began taking it, for two weeks he seemed out of control. He was hyper, he wasn’t sleeping, and he was very difficult to manage. During this time I worked closely with Dr. Maes, speaking with him on the phone everyday,
weekends, and evenings. He was incredible. After those two weeks, for the first time ever, Jamie slept through the night. He was four years old. Three cheers for Dr. Maes!
The next stepping-stone revealed itself when I read about a product
called “Metal Free.” Jamie had been continuing his Captomer to rid his body of metals, but Metal Free was a new product that promised more effective treatment and was gentler on the body. It just so happened that Dr. Maes had it available in his office. Two weeks after starting the Metal Free, Dr. Maes ordered another round of stool and urine tests. This was called a purge test. It would show us what was coming out of Jamie while on the Metal Free. The test revealed Jamie was dumping metals out of his body including mercury. It was amazing! After this single addition to his treatment, Jamie had begun to improve even more with his eye contact, as well as his verbal skills. I was so excited to have him actually look at me and to be able have a conversation with him. At this point, I realized he was making gigantic improvements. All of the things that we were doing were helping.
During our time in Santa Barbara we also met Shelly Greenbaum, a
wonderful speech language pathologist. We worked with her twice a week. We also worked with Serena Sutherland OTSI (Occupational Therapist specializing in Sensory Integration).
Back home we started to work with Diane Osaki from the JFK Center
with regard to putting Jamie’s program together. She came to our home and did some initial testing. She put together a program for him witch consisted of speech therapy, physical therapy, occupational therapy, and music therapy. She helped place these professionals in our home on a daily basis. We continued with the Son-Rise Program. Maintaining our diet was difficult inasmuch as it included no wheat, dairy, soy, corn, or sugar products and always organic everything, including products for the outside of the body. We continued Jamie’s supplements regimen, as well as closely working with Dr. Grossman, Dr. Klepper, and Dr. Maes. At this point, the majority of the conversations I was having with Jamie, he was keenly aware and observant to what I was saying and what was going on around him; but there were still portions of our exchanges where he wasn’t with me and I wondered if Jamie would ever fully recover. We kept forging ahead.
My father-in-law Dr. Robert Vance told me about Dr. Max Collins in
South Carolina. His therapy involved using a laser Diode, which he had designed, to help continue the detoxification of heavy metals, radiation, and
parasites in the body. We decided to make the trip because even though it sounded kind of “out there,” we learned about it from a reliable source and wanted to continue our open-minded pursuit of Jamie’s cure.
Dr. Collins treated Jamie, along with our entire family, twice a day for
eight minutes each time along with certain manipulations throughout Jamie’s body. We stayed in South Carolina for seven days and really enjoyed our time there, but when we returned home, Jamie became very sick. Dr. Collins had warned us that this could happen. He advised us to help move along the parasites from Jamie’s body with black walnut. Jamie’s improved sleeping habits had continued for a year, but after the South Carolina visit, they became interrupted again. Dr. Collins expected this change in Jamie and told us to continue giving him the black walnut for eight days. He said after the eight days Jamie should be fine.
Exactly eight days later, Jamie was better. He resumed sleeping through
the night. I was so relieved. We saw a drastic improvement in Jamie over the next couple of months, just as Dr. Collins had predicted. We decided to make another trip to South Carolina, feeling that a second treatment would make him all that much better. Jamie again got very sick. But seemed to recover quickly the second time.
One day, after the summer of 2002, I was giving Jamie a bath when I
suddenly became aware of what was happening between us. We were talking about the day, just going back and forth in conversation completely connected. Jamie was connecting with me! I could hardly believe it! Jamie’s ability to connect had come in such small increments that I had to stop myself to recognize just how amazing his progress had been. A flood of emotions enveloped me. These weren’t anxious or excited feelings, but rather a calm assurance that at that moment I knew my son was recovering from autism.
On a return visit to Dr. Rubin, the doctor who first suspected autism in
Jamie three years earlier, Jack and Jamie were given their routine pediatric exams. Dr. Rubin looked them over physically as well as using a round of questioning to check their development. Dr. Rubin was stunned.
“I would never have believed it if someone told me three years ago that
Jamie would be like he is right now. I would have told you that this child would have been autistic the rest of his life. He’s an angel! He must have come to you because he knew you would help him.”
It was undoubtedly the highest compliment that I had ever received. It
made me feel very proud to have someone outside of our family recognize just how far Jamie had come and how hard we had worked to get him there. I was finally able to take one of my first deep breaths since Jamie’s diagnosis.
Over the next year Jamie continued to have speech therapy twice a week
and continued to work with Unique Prints for intensive therapies including OT, Music Therapy, and Jin Chin. We also had fun with music therapy at home with Jenny Lee. As time passed, we slowly began to not need these therapies. Jamie no longer needed assistance in preschool and continued improving on a daily basis that was simply astounding.
In the last five years I have probably learned the most as far as human
behavior and what makes up the human spirit. I also learned so much about the anatomy and physiology of the human body. Because of my perseverance and my huge desire for Jamie to be “normal,” I pushed Jamie, my family and myself to places we never knew existed. The people with whom I surrounded myself were vital to our ability to accomplish what we did. This is the most important advice that I could give to another mother: surround yourself with the kind of people whose hearts and minds are open to all things and have the same goal for your child as you do. Always go for the tenth opinion. Keep searching until you find the open door.
One in every
166 kids is labeled with some form of autism and few are
expected to recover. We should be
expecting that they would.
Jamie recently turned eight. I just received his second semester report card
and he received all A’s one B. He and his brother both received double honors
for academics and citizenship. We are so proud of them. Jamie is an incredible
boy. We wanted more than anything for Jamie to be a part of our world and
we asked him to do some very difficult things during his recovery. Things that
seem trivial and typical to most of us were monumental challenges to Jamie.
All of his experiences as far as autism and his breathing issues have made him
the little boy that he is today— resilient, loving, kind, unassuming, and full of
pure love. Jamie is completely recovered from autism. He displays absolutely
no signs or nuances of this disorder, I am so very grateful and thankful to say. For the full story
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