Generation Rescue has some encouraging stories of recovery.

When Hamhock was diagnosed, I emailed a local mom whose son’s story had been featured in a local newspaper.  She provided me the following detail of his recovery.  (As of January 2009, she is working with local legislators to pass Clay’s Law:  mandatory group health insurance coverage for early behavioral treatment for ASD children in UT.)

Here is Clay’s story, as provided to me by his mother, Leeann Whiffen in July 2006:

 

SYMPTOMS

June 20, 2000:Our son Clay was born a healthy 8 pounds 9 ounces, in Walnut Creek, California.We had no complications during the pregnancy or delivery.Clay grew and developed at a steady, healthy rate – like his older brother.Clay displayed much affection from an early age, initiating hugs and other intimate contact with family members.He smiled brightly when we took his picture, and his eyes danced with life and energy.At approximately 16 months of age, we began to lose our son.

Not only did he avoid affectionate contact, even with close loved ones, but also he began to cry and scream regularly.His jabbering and words were replaced with high-pitched squeals and shrieks.On average, he would tantrum 60% of his waking hours, with the severity of his screaming increasing when people other than his Mom, Dad, & brother were present.He would engage in self-stimulatory play – even with the most enjoyable of toys.They were often lined up at the top of the stairs or on a table so he could tilt his head sideways and look closely at them as they were moved back and forth.He would line them all up in a row.If one were moved in any way he would have a severe tantrum.His older brother stopped trying to play with him because Clay simply did not respond to the attempts.His vocabulary shrunk from a dozen words to two indiscernible sounds he would say over and over.He could no longer even say “mama”.He also stopped referencing or pointing to objects that he wanted, such as food or toys.He began staring at lights or looking into space for long periods of time.If I were to block his view, he would look right through me, totally unaware of my presence.

He also began displaying signs of sensory difficulties.Clay would constantly walk to our back door and scream for us to open the door to the backyard.Once out back, he would scream if we did not push him continually on the swing (once we pushed him for 40 minutes, and he did not move or make a sound while swinging).When his shoes were off, Clay walked on his toes – with the toes curled under his feet (all contact with the floor was on his toe knuckles).His tantrums would often escalate to the point where he would jump down several stairs, kick his legs up while in the air, and land flat on his bottom on the floor.He would only eat foods that were tan in color and smooth in texture.

Clay stopped looking at us directly in the eyes, and avoided any contact with others – even close family members.The more people around him, the more severe his tantrums became.He would not allow us to leave him with family members, baby sitters, nursery, or any other setting that involved persons other than his parents.We could not take him for walks, to the park, or to perform errands because of the quantity and duration of his tantrums.Sometimes, just in one outing, there would be four or five tantrums that would last 15 minutes or more.He would not follow any of our commands, or bribes, to stop screaming and to not run away.

Clay’s belly became distended and be began having chronic diarrhea alternating with constipation.This chronic constipation actually began at age six months.He would sometimes go over two weeks without having a bowel movement.The pediatrician felt like he couldn’t truly be constipated if he were solely being breastfeed.He said he would be fine and recommended prunes, juice, applesauce and other natural laxatives.Nothing seemed to alleviate his symptoms.After much prodding, the pediatrician ordered a barium enema to detect Hirschsprung’s Disease test.It came back negative, however, I did find out a couple of years later after requesting his file, that the radiologist had noted that Clay had a “megacolon”.Clay also had chronic multiple ear infections and was given rounds and rounds of antibiotics.His ears and cheeks were constantly red.He would wake multiple times in the night, seemingly unable to sleep.

DIAGNOSIS

Finally, we sought and received help from Kids On The Move – a government funded program that assists children, and their families, under age three who have developmental delays.We spent some time with their professional counselors, instructors, speech and occupational therapists, and caseworkers.Despite their work with thousands of other children, they were shocked at the extent, intensity, and duration of Clay’s behavioral issues.After just a few weeks, our counselor at Kids On The Move confessed that their services were not sufficient to meet the needs of our son.They suggested we seek an evaluation from a child psychologist to obtain a diagnosis of the problem, and a recommendation for a course of action.

Dr. Sam Coates, of the Utah Valley Regional Medical Center, diagnosed our son as PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).During the evaluation, Dr. Coates knelt behind our son and called his name several times to get his attention.We were told that children his age shrug or show some other physical sign when ignoring someone.But our son acted aloof – as if he was unaware that the Dr. was calling to him.Dr. Coates mentioned that the DSM-IV table used to diagnose autism was meant for children age three and older.He said it was likely that we would see more autistic symptoms surface as Clay got older.This proved to be true, as Clay later began to display symptoms that we hadn’t seen prior to his initial diagnosis.

Dr. Coates recommended pursuing an intensive, in-home behavioral therapy program – called Applied Behavioral Analysis (ABA).Doctors and researchers at UCLA developed this program in the early 1980s.Statistically, for children who are involved in this intense behavioral intervention program (beginning at age three or earlier for 40 hours per week)– approximately 50% are eventually mainstreamed with children their age, and are indistinguishable from their peers – in other words, they are no longer diagnosed as autistic.

This gave us a lot of hope for our son, especially since he was so young.As we researched our options, we felt this would help our son reach his greatest potential.Not long after looking more into the application of an Applied Behavioral Analysis program, I found an article written in the Wall Street Journal, Science Section, regarding the neuroplasticity of the brain, and how, in a sense, the brain can be rewired on demand.This gave me great hope, and a sense of urgency, to get started as soon as possible so we could take advantage of this “window of opportunity” and hopefully initiate the forging of neuronal synapses by teaching him step by step, in repetition what typical developing infants, then toddlers were learning from the stimuli in their environment.

TREATMENT

July 2002:We immediately hired a consultant and instructors to help us begin an ABA program.Clay was still taking naps, so we started at 20 hours per week and gradually increased to 40 hours per week by the time he turned three years old.We started with very basic programs to gain compliance.We could not teach him until he learned to sit in a chair.This took some time, but once we were successful with this, he seemed to have an acceptable rate of acquisition with the programs thereafter.We then taught him how to play with toys, put puzzles together, match objects, and nonverbal imitation.We focused quite intensely on verbal imitation.He tried to imitate sounds in his high-pitched, sing-song voice.It took him several months, but he finally started to put the sounds together that he had learned to form words.

September 2002:I found Bryan Jepson, MD, Medical Director of the former Children’s Biomedical Center of Utah.Dr. Jepson was an ER physician who dedicated two days out of his week to treating children with autism.Having a child with autism himself, he was part of a growing movement called Defeat Autism Now! which focuses on treating the symptoms of autism biomedically.I was pleased to find that he validated my concerns regarding Clay’s gastrointestinal abnormalities.In fact, he said that this was quite common among children on the autism spectrum.He mentioned that there was evidence that children with ASD seemed to have underlying gastrointestinal, immunological, and toxicological issues.I was a little leery considering this was “alternative” medicine, being very much “mainstream” myself.However the preliminary research was quite convincing, and I felt that it was quite safe.If it didn’t help my son, I would discontinue it.I didn’t want any regrets, and I certainly could not afford to put all my eggs in one basket, especially since anecdotal evidence suggested many of the treatments offered were significantly helping many children with autism.I couldn’t wait for the double-blind placebo tests to be completed many years down the road.After much thought and research we felt this was the right path to take.

October 2002:We placed my son on a strict diet free of gluten and casein.1This was very difficult to do, not only because it required me to bake all of his food separately, but mostly because Clay’s self-imposed food restrictions.Over a course of three weeks, we were able to replace most of his current foods, with gluten and casein free versions.After two weeks of Clay being strictly on the diet, he slept through the night for the very first time.A week later, his bowel movements began to normalize.

Various tests showed that Clay had an overgrowth of bacteria (Clostridia Difficile) and fungus (Candida Albicans) in his gut.We treated for this with Flagyl and Diflucan.During treatment his behavior became worse and as well as his diarrhea.I followed up with copious use of probiotics.After a week or so his bowel movements became normalized again.I began various vitamin supplementation (Cod Liver Oil, Magnesium, B-Complex, Zinc, Amino Acids, and Vitamin C) according to test results showing deficiencies.As Clay’s bowel movements and sleep patterns normalized, his behavior became better as well.

November 2002:Dr. Jepson mentioned that we might want to consider chelation with DMSA.He said many kids with autism were showing signs of heavy metal toxicity, including our son.There is no reliable test for this as lead and other heavy metals are only evident in the blood a day or two after initial exposure.After much thought, and consideration, I decided we would pursue this.We chelated our son for two years right up until he lost his diagnosis.We tested him every three months to ensure proper liver function and to get a neutrophil count.We continued to see my son make significant gains.Frankly, I will never know how much to attribute to biomedical or early intensive intervention.I will say this though…I have no regrets. I felt like I couldn’t afford not to try a viable treatment option if it were indicated.

March 2003:I learned about a new style of ABA called “Verbal Behavior”.I was really interested in this because it focused on teaching language more functionally.Sometimes Clay would use words, but wouldn’t use them correctly or functionally.What good is language if it is rote?For example, to teach the word “cookie” you wouldn’t say to him, “Say, cookie”, you would show him a cookie and teach him to try to say cookie.If he said cookie, or something close to it, you would reward him with the cookie.It just made sense.Our consultant was unfamiliar with this style of teaching, so I obtained a training manual and trained myself and our instructors on this new methodology.She later attended VB training sessions and became trained and certified.

June 2003:I became interested in a possible viral role in the etiology of autism.Dr. Vijendra Singh a researcher studying the role of autoimmunity in autism at Utah State University found a statistically significant amount of kids with autism had elevated measles virus antibodies in their blood and even cerebral spinal fluid, suggesting an autoimmune reaction.This also corresponded with brain autoimmunity, marked by MBP, myelin basic protein, antibodies.These two immune markers correlated in 90% or greater autistic children.2-4I wanted to test my son, but Dr. Singh wasn’t taking anymore samples.I talked him into letting me personally drive to Logan with the vials of blood to be tested.He agreed and I was able to visit with him and take a tour of his state of the art lab.When I received the test results back it showed that my son had very high Measles antibodies (five times the reference range), and antibodies to his myelin basic protein.I later confirmed this finding with another reputable lab, which is overseen by a Dr. Vodjani in California.

Dr. Jepson recommended we put Clay on a high dose of Vitamin A to counter the high levels of antibodies.Understanding that Vitamin A can be toxic in high doses, we made sure to test his Retinol A levels periodically.Learning that his Varicella antibodies were very high as well, we decided to do a trial of Valtrex.Testing at a latter date revealed that the antibody levels had actually gone down.Clay continued to progress.Although, as mentioned earlier, I cannot accurately attribute any particular gain to a specific treatment.

July 2003:We began stage two of chelation with alpha lipoic acid.At the time, evidence suggested ALA crossed the BBB.However, recent studies have shown otherwise.Nevertheless, we proceeded with DMSA coupled with ALA.We continued this until January 2004.

September 2003: I attended the DAN! Conference in Portland.Dr. Jill James (University of Arkansas Pediatrics, Birth Defects Researcher) presented on her recent findings in regards to polymorphisms (MTHFR) in the folate/methionine/glutathione pathway.5She compared 20 autistic children with 33 control children.She found that the autistic children had significantly lower levels of methionine, SAM, homocysteine, cysteine, glutathione, and GSH/GSSG ratios. Autistic children had significantly elevated SAH, adenosine and oxidized Glutathione (GSSG).After giving the autistic children a trial of methyl B12 injections, Betaine (TMG), and Folinic Acid, she noted a highly significant increase in plasma methionine, cysteine and glutathione levels and a 2-fold increase in GSH/GSSG.This lead to strongly improved antioxidant capacity.

Because of Dr. James research, I started my son on a trail of MB12 injections, TMG, and Folinic Acid.

Clay started preschool with a shadow to help him if needed, and to take notes so that we would know which programs needed more work.

October 2003:We integrated the use of Earobics and Away We Go software into regular programs.

January 2004:.We finished chelation.We started RDI (Relationship Developmental Intervention) founded by Dr. Gutstein.Dr. Gutstein’s research focused on the fact that even though an autistic person might become functional, most of them still lack any type of relationship in their lives.This type of therapy focuses on finding rewards in relating to others.This program was a good supplement to ABA and generalizing programs to everyday life.

May 2004:My son received a full neurodevelopmental work-up from Dr. Jennifer Gale. He tested average to above average on all of the testing, including an IQ test.He no longer met the qualifications on the DSM IV table under Autism Spectrum Disorders/Pervasive Developmental Disorders.We continued behavioral/educational treatment including upper level Theory of Mind and Executive Functioning programs until December 2004.Dr. Gale feels like Clay is a candidate for Kindergarten with an aide if necessary.

September 2005:Clay started Kindergarten without an aide or shadow.His teacher does not know of his past, and I chose not to tell her.He has made friends and loves going to school.

February 2006:We recently had parent-teacher conferences.Mrs. Brinkerhoff tells me Clay is at the top of his class academically doing exceptionally well with his reading.She tells me she wishes her other students could be as excited and enthusiastic as Clay.She still does not know of Clay’s past.

NOTES

Through all of the treatment, we saw steady gains.Sometimes it was one step forward, two steps back, but in the end we fortunately came out ahead.I vowed that I would do everything in my power to make it easier on parents going through our similar experience, and many who unfortunately have not had the same success we have had despite working as hard or harder than we did at trying to find appropriate treatments for their child’s unique circumstances.My heart goes out to them.I know how difficult it is to be in those trenches, and many of them are still fighting day-to-day for their child often times while dealing with behavior, aggression, and the inevitable challenges that come with being a parent of a child with a disability like autism.I hope in my lifetime to see a cure for autism.For now, I would certainly like to see more dollars being spent on research—unbiased, solid research.

I am currently writing a book, a memoir, about our story in the hopes of helping others find hope and support.I would like to donate the proceeds to a non-profit organization I plan to start to help families afford early intense intervention.

_____________

1. Jyonouchi H, Geng L, Ruby A, Reddy C, Zimmerman-Bier B. Evaluation of an association between gastrointestinal symptoms and cytokine production against common dietary proteins in children with autism spectrum disorders. J Pediatr. 2005 May;146(5):582-4.

2. Singh VK, et al. Serological association of measles virus and human herpesvirus-6 with brain autoantibodies in autism. Clin. Immunol. Immunopathol. 89: 105-108(1998).

3. Singh VK, et al. Abnormal measles-mumps-rubella antibodies and autoimmunity in children with autism. Journal of Biomedical Science 9: 359-364 (2002).

4. Singh VK and Jensen RL. Elevated levels of measles antibodies in children with autism. Pediatric Neurology 28: 292-294 (2003).

5. James SJ, et al. Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism. Am J Clin Nutr. 2004 Dec;80(6):1611-7.

 

 

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