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Scot was born on June 30, 1998 after a relatively easy labor. He was a healthy, beautiful baby with fine blond hair and bright blue eyes. And being a new mother, I did as I was told when it came to the doctor's orders: Scot received his first vaccination approximately 48 hours after birth.
The birth may have been easy, but life became very difficult. Scot did not sleep well and he was a fussy baby. I had tried to breastfeed but gave up after a few days of intense frustration. Scot seemed to make the transition to formula well though and my immediate frustrations were appeased.
During Scot's first several months he grew like a weed, always in the upper percentile of the chart when we would go to the doctor for a well visit and more vaccinations. Every vaccination was given on time, usually more than one shot per visit. But this was what was best for my child and who might ever consider that something more was at stake?
Scot's second year of life became more troublesome than his first year. For some reason, he was still not sleeping well. He would wake up crying anywhere from 4 to 8 times in the course of the night. A few sips of formula or, later, milk would send him back off to sleep easily, only to wake again an hour or two later. We experienced a period of ear infections that did not want to go away no matter how many courses of antibiotics were given.
Around Scot's first birthday, he received several immunizations in one visit, most notable was the MMR (measles, mumps, rubella). By October, a few short months later, I began to notice a change in Scot. It was subtle, changes that only someone who spent each day, everyday would notice. His playing was different, his behavior and mannerisms were different. I couldn't quite put my finger on it, and I certainly had no idea of what was going on.
I will never forget Halloween that year. Scot had yet another ear infection, but being his first year to go trick or treating, I was determined to take him to a few houses at least. A few houses turned into a few streets of houses. I even got him to say "Tank-goo" to several people who gave him candy. It was adorable. It was also the last time I would hear real words used with meaning out of his mouth for a long time.
A few weeks after Halloween, Scot regressed. The 6 or 8 words that he knew disappeared. He could say 3 words: mama, dada, tickle. But it became very clear that he had no idea what the words meant, they were more sounds that he echoed with no comprehension. And I did not comprehend what was going on either, I just knew that something had changed.
By Scot's second birthday, I mentioned to the doctor that Scot seemed more hyper than other children. I was promptly asked if I wished for a prescription for Ritalin. I was shocked that it would be so easy to get Ritalin for a child only 2 years old, and replied to the doctor that I only mentioned the hyperness to have it on record, not because I wanted a prescription.
At that time, I pressed to have Scot enrolled in some type of speech therapy program. He was still not talking and his behaviors had grown worse. Our insurance only covered a 3 month period for speech therapy, so we went 3 times a week during those 3 months. It was also recommended by the speech therapist that we have Scot evaluated by a pediatric neurologist.
The pediatric neuologist could find nothing wrong with Scot. His hearing was fine, his head scan was clear, and his EEG came back normal. The doctor concluded that Scot was suffering from a comprehension delay and that at some point in the next 6 to 12 months, Scot would experience a rapid acceleration of comprehension that would bring him to the level of his peers. Looking back on that conversation, it sounds more like a tale spun by a fortune teller, not a well educated doctor. Scot was 2 and 1/2 years old at that point.
It wasn't until my sister in law said it that anyone ever attached the word "autism" to my son. I remember that he was nearly three years old and still not sleeping through the night. He had had little success at speech therapy; a few sign language words had been the biggest improvement. He exhibited the traits of handflapping, echolalia (echoing back what was said to him with no comprehension), antisocial behaviors, rigidly stuctured play, hyperness, and babbled instead of speaking. But because no one else had ever mentioned autism, I was furious with my sister in law. I felt she had no right to label my son when no professionals had ever breathed "autism." Not to mention I was still holding out on the hopes that my son might recover on his own like the neurologist had said.
It was the same sister in law that also suggested Scot had possibly been harmed by his vaccinations. I scoffed at the idea. The medical community knew best. Diseases such as polio, mumps, and everything else my child had been vaccinated against were dangerous and possibly life threatening. I thought she was a fool for not vaccinating her own newborn.
Life continued on and Scot was enrolled in a special education class at a local elementary school. It was for children 3-5 years of age who had some kind of impairment. By this time, Scot's brother Alex was born and I had my hands full trying to take care of a newborn and a child who I suspected suffered from ADHD. The class was a boon for me. I was in desperate need of a break from Scot who frustrated me to no end in his inability to "get better."
The second year that Scot was in the class, he was transferred to a different school. The increase of special needs children forced another school to open a similar classroom and the new room was in a school even closer to my house. I got along well with the new teacher, although due to teaching requirements, she was replaced later in the year.
The new teacher, Michele, suggested to me that I have Scot evaluated. She cautiously mentioned "autism." Because I got along so well with this teacher too, I agreed to have Scot unofficially evaluated and tried not to be offended that she used the evil word in conjunction with my son. Unfortunately, the specialist agreed with Michele. Scot most likely had autism. He suggested that I try for an official diagnosis.
A month shy of Scot's fifth birthday, he was officially diagnosed autistic with ADHD symptoms. That specialist felt that a stimulant such as Ritalin would help my hyper child to sit still and concentrate better. This would help him to improve at a faster rate. I was quite leery of Ritalin, but agreed to give it a try. The results were disasterous. When the drug would be active in Scot's system, he would sit in the couch, staring off into space like a zombie. When the drug wore off, he would become even more hyper and had trouble going to sleep. Not to mention, he was still waking up frequently during the night. Scot began to have excessive bouts of emotion: sobbing over nothing, and screaming in protest when I would try to take him to school. A two week trial of Ritalin didn't last a week and a half.
The doctor actually argued with me that the Ritalin had been effective. I refused to give it to Scot though, so the doctor gave me a different prescription and told me to try that for two weeks. I was torn. I really did want Scot to get better, but I didn't want to drug my child. I didn't like feeling that my child was becoming a prescription guinea pig. There had to be another answer.
Another mother at a church I attended had a child with ADHD. I remembered her struggle to find something to help her son that didn't include prescription drugs. She had mentioned changing her son's diet. Eagerly, I called her up but was quite disappointed when she told me of failure. She insisted that the diet she had tried had not worked and recommended that I try the drug Concerta on Scot. Drugs were the last thing I wanted to hear about though.
A few months later, a book was given to me. It was titled, "Unraveling the Mysteries of Autism and Pervasive Developmental Disorder" by Karyn Seroussi. So much of her story concerning her autistic child lined up with Scot's story. Her biggest discovery was that her child had several food intolerances that greatly exacerbated his autistic traits. Elimination of the offending foods actually brought her son to the point of losing his autism diagnosis. The primary food culprits were gluten, found in wheat products, and casein, which is a dairy protein.
I decided that I had nothing to lose. Medicine had only had a negative effect. Maybe Scot had food sensitivities just like this other boy. Weeks went by as I did research online and in the grocery store to determine what foods were gluten and casein free. Casein should be eliminated first since it leaves the body quicker than gluten, typically in 2 weeks, and is usually easier to work around. Gluten takes approximately 8 months to leave a body completely. The scope of the GFCF diet was quite daunting when I began to realize that everything my child ate was loaded with gluten, casein, or both.
The loss of milk was probably the toughest hurdle when we removed dairy. Scot did not like rice milk at all. Cheese, yogurt, and ice cream he could live without, but losing milk was hard on him. Strangely though, Scot began to sleep through the night. After 5 years, he was finally sleeping all night long, and the only thing we had done was remove dairy from his diet.
In time, we removed gluten. That did not prove to miraculously fix any problems, but we did notice a small improvement in Scot's behavior overall; less echolalia, hand flapping, and other autistic traits. Next came soy. Through an online community in Yahoo, GFCFKids, I heard that autistic kids who could not tolerate soy usually were very hyper. That was Scot, so I removed all soy products. It was a major improvement in Scot's hyperness. Soy free didn't completely cure his excess of energy, but it tamed it down to a much more acceptable level.
In all, we eliminated gluten (made Scot regress), casein (gave Scot upset stomach), soy (hyperness), fruit (hyperness), potato (regressive behaviors), tomato (hyper), carrots (gave Scot diarrhea), and artificial colors and flavors (unnecessary in a healthy diet, I felt). Now, 4 years later, we have been able to add back in tomato, fruit, and limited quantities of carrot. But, we have also found out that Scot is allergic now to rice.
In addition to the GFCF diet, I started Scot on a variety of supplements. A hair analysis came back with several vitamin and mineral deficiencies, and so I work to correct what Scot lacks. First was calcium. With no dairy, Scot had no source of calcium. Then we added chromium and selenium (both were essential in taming Scot's hyperness further). L-Carnitine helped Scot's poor muscle tone, and a digestive enzyme (Peptizyde from Houston Neutriceuticals) to help with incidental ingestion of gluten and casein. Scot still had some problems with moodiness, so I added St. John's wort to the regimen, and flax oil for the essential fatty acids. Recently we have added weekly injections of B-12. I can't begin to list all of the supplements we tried; some helped, others did not help. But none ever had a negative effect.
Diet and supplements were critical for Scot's improvement, but there was one last area I wanted to try. Some considered it a dangerous process: chelation. Frequently, autistic children's bodies do not function properly to rid their bodies of toxins, and our world is full of toxins. It's in the air, in our mattresses, our food, and definitely in vaccinations. Research lead me to suspect that Scot had been damaged by the thimerisol (a preservative derived from mercury) that had been common in vaccinations at the time of Scot's birth. The only real way to remove the toxic metals from Scot's body was chelation.
We began to see a doctor who had a strong focus on healing bodies through natural methods. He was a DAN (Defeat Autism Now!) doctor. DAN ascribes to a protocol of treating autistic children through diet, supplements, and chelation. Prescription medication is always considered a last resort, not a first or only option. With our DAN's help, we began to chelate Scot first with a chelator known as PCA-Rx, then later with NDF Plus. It's a process, but I can see the improvement in Scot and I know it's working. What the doctors promised Ritalin would do for my son, a healthy diet, proper vitamins and minerals, and removal of toxins have more than done. His improvement is an amazement to anyone who knew him before we started the diet, and even to people who meet him now.
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