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My son's story

[You can click on any underlined word for more information on that subject.]

Capsule summary of biomedical

My son was autistic from HepB vax at 2 days old. He has a dx of "Kanner's autism", which is autism from birth, or "genetic". He had no development whatsoever, and at age 3-1/2 he was evaluated as developmentally 0-3 months.

After much experimentation, I discovered he tolerated basically no foods. HNI enzymes allowed him to eat many, but not all, foods.

Chelation with ALA removed ALL his food problems, plus eliminated his tendency toward yeast. I also used several supplements to replenish his body, altho he did not start tolerating supplements until about round 50. He no longer needs many supplements.

But even with chelation, certain issues remained. It was frustrating, because an issue would disappear for about a week, then come back again and stick around. It was like, as the metals were leaving, something else was increasing to take their place.

The high dose vitamin A protocol helped tremendously. This addresses measles virus. He has also done well with olive leaf extract and Lauricidin. Lauricidin caused yeast again for my son, so he was also on anti-yeast supplements again. Adding Peptizyde [a protease enzyme which breaks down the outer coating of the virus] and removing Lauricidin, finally eliminated the virus/es. My son no longer needs anti-virals. This anti-viral process took approx one year.

Now I am addressing other supplement needs my son has. He appears to be a "mito" kid, who did not adequately metabolize fats/fatty acids until I started the mito cocktail. He was also seriously deficient in almost all nutrients.

So for my son, he was apparently high metal AND high virus, which caused a host of biomedical issues that I had to address once the metals and viruses were no longer present. He no longer qualifies as autistic, altho his language is still delayed. He is age 9 now, but acts more like an average 3yo child.

Introduction and Diagnosis

My second son did not develop and then regress, he just did not develop at all. He had NO language, receptive or expressive. The best description would be that he was "not here". He was a basically good kid, but he was just "not here". No language, no social, all he did all day long was line up objects and twirl sticks. I had him evaluated at age 3-1/2. He scored at the developmental level of age 0-3 months for expressive language and 6-9 months for receptive language. He had no "play skills", he was content to line up objects and stare at them all day long. He also had no interest in any of his siblings. He did not sleep much, and he laughed a lot, even in the middle of the night. Fortunately, he was not aggressive or self-abusive. I learned later that he was probably injured by the HepB vaccination when he was two days old.

He was diagnosed by a Pediatric Neurologist as classic Kanner's autism. I was told he would never really develop much, altho with certain therapies it would be possible that perhaps he could live in a group home setting rather than an "institution". The neurologist told me to enroll him in the public school, and the people there would tell me what he needed as education.

All interventions indicated here in this story were things I discovered and researched myself, after obtaining information from the internet, books from the library and other sources, and other parents. Except for the initial diagnosis, my son has never seen a medical professional or had any testing performed, except for routine well-child checks, urgent care visits for illness and injury, tubes in his ears at age 2-1/2, and one year of speech therapy two hours per week.

Education and Therapies, Part I

I homeschool my children so I do all the therapies and other interventions with my son myself. Beginning in September 1999, I started with ABA, sitting him in a chair and doing the drills as per the Catherine Maurice Manual "Behavioral Intervention for Young Children with Autism". I did this for approximately two one-hour sessions each day. My son learned the things relatively slowly, at least it seemed that way to me. He never did learn the object identification/labeling, nor was he at all interested in pictures in books, and he could not relate that a picture was a representation of an actual object, so I was unable to use PECS with him. But he did relatively well with simple one-word verbs and commands, and certain toys like stacking cups and puzzles and things like that. But it would take him approximately two weeks to learn each new concept, word, or command. And most days it was relatively difficult to re-direct him from twirling sticks and lining up objects.

GFCF Diet and Supplements

Right after his diagnosis, I began searching on the internet for information about autism. I found the gfcfdiet site approximately December 1999, and I read the information there. My son did not meet many of the signs for whether that diet might work for him, especially the indicator that most children who respond to that diet develop normally and then regress around 15-18 months, because my son never developed at all. But I decided that since he was 3-1/2 years old but developmentally less than one year old, the diet could not hurt him, and might actually help, even a little.

Before I started this diet, I completed his ATEC score, which was 98. This puts him in the "severely affected" category, the 80-89th percentile. I then removed all the dairy products first, then the next week I removed all gluten. Altho being a picky eater is one of the signs to look for, my son was not a picky eater, he would eat anything, so this was not a difficult thing to do. The only thing I really noticed was that suddenly he seemed a lot more hungry than he was before, but this was not because of a low weight problem or anything, he is actually built like a football player. And he would still eat anything, but now that meant literally ANYTHING, including inedible objects. I learned later that this is his response when he is eating foods he does not tolerate, and he had MUCH WORSE issues with rice and corn, than he did with gluten and casein.

Altho most parents from the gfcfdiet site indicate their children showed noticeable improvement about 3 days after removal of dairy products, my son is apparently more gluten-intolerant, I had to wait about 3 months before I saw any improvement. But gradually I saw changes in him. The most important one for my then-current mental health, was he began sleeping through the night, which improved even more with the removal of highly phenolic foods. Also, he became more interested in his siblings, and he began playing with them. His language ability and obedience to commands improved.

After 3 months on this diet, my youngest child had her first birthday and I began giving her regular milk to drink, and she developed diarrhea. Plus my third child who is probably PDD, had an oozing skin rash. So I decided to try this diet with all of my younger 3 children. They are also benefiting from it, my third sonís skin condition is nearly gone now, and he is developing language now. My youngest child is NT but does not have diarrhea any more.

After 5 months on the gfcf diet, I discovered my children had problems with most other foods too. I went to the specialfoods diet, eliminating all "normal" foods for 4 months, then adding back the "normal" foods one at a time, to determine which additional foods might be causing my children problems. Other parents decide to determine other problem foods through testing, but I did it through rotation diets and the specialfoods diet. [At this point in time, digestive enzymes were not commercially available. Now, because of the ready availability of enzymes, I would have used enzymes instead of this diet.] I discovered all three of my younger children also have difficulty with soy, potatoes, bovids [beef, lamb, buffalo], and most fruits and vegetables, as well as many other different foods. By the time I had removed all the foods my children did not tolerate, they were down to four foods that they would tolerate fairly well. I also discovered that they do not tolerate most supplements, including most vitamin supplements, cod liver oil [CLO], essential fatty acids [EFAs], DMG/TMG, and most of the other "recommended" supplements. I found a general vitamin supplement and a calcium supplement at my local health food store, and that is all the supplements I used with my children for the first 18 months of this diet.

Education and Therapies, Part II

After approximately three months on the gfcfdiet, my son began to understand object labelling, and he began learning the concepts at a faster rate. He would now learn things in 1-2 days, instead of 1-2 weeks. He was able to identify pictures in books as representations of actual objects. He began to be interested in television and videos, but animation only, not "real life". He began saying single words and playing semi-appropriately with toys. He would still twirl sticks and occasionally line up objects, but was much more easily re-directed to doing something more appropriate. I have now migrated to DTT-NET and AVB , which is similar to ABA but is done in the "natural environment" during his daily life, and not sitting at a table.

Digestive Enzymes

Approximately June 2001, I started my children on digestive enzymes, because they were eventually reduced to tolerating only those four foods, and I knew this would not be practical for the long term. I have found that these enzymes allow my children to tolerate most foods now, altho not all. They tolerate gluten and casein now, but not certain other foods, primarily artificials, rice, and luteins. They also still do not tolerate a few other foods, including high phenol foods, and most supplements.

Adding No-Fenol enzyme allowed my son to eat most phenol foods, but not all, especially not lutein foods.

I have seen an increase in normal sensitivity of my second son, before enzymes he was relatively insensitive to pain, but now when he is injured he will cry. I have also seen great increase in social ability and language ability for all three of these children, a very large decrease in the remaining stims of my second child and the remaining skin-rash issues of my third child. I began potty training my second child. His ATEC score after these enzymes is now 26.

Heavy Metal Chelation

Approximately September 2001, my children seemed to reach a plateau. My second child still had difficulty putting more than 3 words together, and he still had visual stims. My third child had difficulty with more than 1-2 words plus he still had a residual skin rash. So after much research, I began chelation for heavy metals. I am using ALA alone, you can read the details of the protocol I chose in the round one description below.

Detailed descriptions of chelation, will leave this expanded version here temporarily

To read rounds one through ten, click here.

To read rounds 11 through 18, click here.

To read rounds 19 through 42, including a summary of diagnostic criteria "before chelation" and "after round 25", click here.

To read rounds 43 through 62, click here.

To read rounds 63 through 84, click here. These rounds include the introduction of many supplements which have been helpful for many autistic children, but which my son did not tolerate until this time. Round 84 was a 4-week-long round that was the end of regular chelation for my son.

As a summary of chelation, at about round 10, my son lost his phenol sensitivity. At about round 50, he started tolerating supplements, and I was able to stop using enzymes, altho the foods he did not tolerate even with enzymes, he still did not tolerate. At about round 70, he tolerated more supplements, and more foods. At round 84, he tolerated all foods and was having problems with supplements, so I stopped the supplements and experimented to determine which ones he still needed.

Benefits of chelation: Major benefit was that my kids now tolerate all foods, and now tolerate supplements. Good start to more language and social awareness, altho those things were still issues.

My son was still having some visual stim issues and a few other issues, so I decided to try anti-virals.

Anti-viral Interventions

To read detailed descriptions of anti-viral interventions, click here.

Summary of anti-viral:

I did the high dose vitamin A protocol to address systemic measles virus. This was very effective in mostly eliminating my son's 7+ years of visual stim issues. It also was tremendously helpful in increasing language acquisition and social interest.

Olive leaf extract and Lauricidin were very helpful for his other virus issues. I used those daily for about 7 months. Then I read that protease enzymes can be helpful in stripping the virus of its outer coating, allowing anti-virals to be more effective. I added Peptizyde enzyme and the next day, and I saw more improvement.

My son started regressing, so I removed the Lauricidin and most of the yeast killers. I kept the olive leaf extract. My son developed a rash all over his body, which lasted for about a month and was apparently viral "die off", because once the rash was gone, I was able to remove the olive leaf extract.

Benefits of this first round of anti-viral intervention: Tremendous reduction of visual stims, much greater language and social interest.

[For the end of visual stims, click here.]

A series of Updates from 2004 through 2006

For various 2004 updates, click here.

For the December 2004 update [including new pictures,], click here.

For the March 2005 through November 2006 updates [including B12/folic acid/TMG, EFAs/mito cocktail/amino acids for language, IP6 for iron reduction, and more anti-virals], click here.

For December 2006 update, click here.

Education and Therapies, Part III

I am continuing with DTT-NET for my second and third sons. They are also learning simply by watching and imitation, so much of the day I treat them as typical 2-1/2 or 3 year old children, although they are older. My #2 is now age 9-1/2, and my #3 is now age 8. Because they are both not yet age-appropriate, they would both probably now receive a diagnosis of PDD, but in general they act like typical children of a younger developmental age than chronological age.

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