We traveled back to Chicago this month to see Dr Zelinsky as well as Dr Usman. The trip went well (except for the weather and flight delays). We were even able to squeeze in a little time for a detour through Detroit for a brief visit and to catch a Sesame Street Live Show with some family and friends.
Cameron did well at Dr Zelinsky's office. We found that his vision problems are improving. He no longer requires the light refractive glasses. He continues to rely on his left eye. His right eye remains on, but he is using it very little. He is also relying on a very narrow center of vision and is not using much of his peripheral vision. Dr Zelinsky gave us some new exercises to use to work on these issues and keep him moving forward.
Our visit with Dr Usman was very exciting. We had several labs to review with her. Cameron has begun to dump larger amounts of metal (provocative test). It appears that the HBOT has helped Cam pull much more metals than he has in the past. We have decided (with the doctor) that we will begin diving two straight hours a day (rather than one hour twice daily). The DAN practitioners feel that two hours in a soft chamber is as effective as one hour in a hard chamber. We were also told that Cameron may begin using the oxygen concentrator when diving. We have decided to begin with the two hour dives first and then add the concentrator in a few weeks if he continues to respond well.
Another thing we noted in Cameron's labs is an increase in ammonia. We know that genetically, this is a potential problem for Cameron. However, this is the first time he has tested high for ammonia. We discovered that the likely reason for this high result currently is that we have been treating Cameron for parasites (homeopathically but intensively). We learned that this sudden high ammonia test may be indicative that we are indeed successfully killing the parasites, as parasites give off ammonia when they die. This is a good thing as long as Cameron continues to handle the treatments and is able to process out the ammonia. Dr Usman added some supplements to help him with the ammonia for now. This ammonia problem should be temporary and will resolve itself once all of the parasites have been eliminated
We discussed Cameron's recent leaps and few regressions since our last appointment. Regressively, Cameron has been hitting emotional highs and lows throughout the day. He has also begun to script slightly (usually reciting the Three Little Pigs). Even these slight regressions can be tormenting to us as parents. Dr Usman reassures us that Cameron is doing spectacular and that these slight regressions are indicative of what is going on with him medically. Part of the reason for the scripting is indeed the ammonia increase. We should see this subside as we finish up his parasite clear and his body catches up with cleaning out the ammonia. The reason for the emotion shift appears to be the metals dumping. We discussed several different plans for addressing this problem and decide to change Cameron's chelation schedule a bit. We decided to move to a weekly IV schedule (previously we were on a biweekly schedule) followed by a day of oral chelation to help his body move out the metals that are mobilized during his IV. The thought is that along with the HBOT, Cam is now mobilizing much more metal but that he doesn't have enough chelator to move the metal all the way out of his body. It is therefore backing up at his liver and is in jeopardy of moving back into his organs if he is unable to excrete it fully.
Lyme and Autism
Our local support group had a guest speaker a few weeks ago. She was a mother of an affected child who has recovered after treatment for metals and Lyme disease. I'll admit I didn't expect this discussion to have anything to do with our family. However, as the presentation continued I became convinced that we needed to speak to our DAN doctor about the possibility and have each of us tested.
What convinced me? First, the reported estimation that perhaps up to 90% of children affected with ASD may also be affected by Lyme Disease. Second, the alarming number of symptoms that our NT daughter has for the disease. Third, the relationship between Heavy Metals and Lyme. Each one creates the perfect environment for the other one to thrive. Since we know for certain that our child has heavy metal poisoning, I feel we would be remiss in not at least ruling out the possibility of Lyme as well.
Dr Usman concurred with our concerns. Not only did she agree to have us tested, but she enrolled Cameron in a Lyme/Autism study that she is participating in. We decided to have the children tested immediately. Because each test costs $250 we are waiting for the children's results to come back before testing my husband and myself.
I've begun to read some research on Lyme. However, I've quickly realized that learning about Lyme and Autism is similar to learning about Mercury and Autism...overwhelming. There is an immense amount to learn and the information you get from the government and "traditional" medical doctors is very different from the truth you learn from the Lyme community and Lyme literate doctors.
New CDC Numbers
The CDC announced "new" Autism statistics this month. I've updated the website to reflect the new 1 in 150 estimate that the CDC has announced (previously 1 in 166). However, I feel obligated to reflect on these "new" statistics.
I've reviewed the study that was published by the CDC announcing that the rate of Autism is now 1 in 150 children. I was in so many ways unimpressed. I was left with the feeling that the study was proposed in hopes of proving that the rate of autism had decreased and when this was evidently not the case, the data was skewed even further in hopes of keeping the announced rate as low as possible. Perhaps I'm cynical, but having seen such unethical actions from the CDC regarding Autism in the past I feel I'm simply a realist.
The data itself is not "new." The study reflects data from 2000 and 2002 of eight year old children. That does not exactly reflect a "new" and accurate rate.
The data from 2000 was to be from 16 states, however several states were omitted from the final data analysis without explanation. The data from 2002 is only from eleven states. Furthermore, to state that data was collected from "states" is a stretch in and of itself. Most of the "states" only include a few counties or even a few school districts. Arkansas appears to be the only "state" almost fully represented. I must admit I was quite shocked to discover that the data from California (which by most is considered to have the longest record of collecting accurate data about children and Autism) was omitted while the Arkansas data was so heavily relied upon.
It is also important to note that the data is of eight year old students receiving special education services under the diagnosis of "Autism." Most people familiar with Autism are well aware that a large majority of students are NOT given an Autism label by the school but are listed as a variety of other disabilities including: development disability, speech and language delay, other health impairments, etc. Therefore, none of the children on the spectrum who were receiving services under any other code were included in this data. Our son, who was clearly Autistic, was originally enrolled in special education with a "speech and language" delay. We later requested that that label be changed to "other health impairments," which we felt was most reflective of his medical and educational status.
The study's authors were very diligent in pointing out that they can not be sure that the rate has gone up or that we simply have better diagnostic tools today. While this argument is old and wrong for so many reasons, I was shocked as I reviewed the data that they seemed to have disproved this "better diagnostic tools" theory with their own research (although they never admit to it). Each and every state they listed had a lower average age of diagnosis in 2000 than in 2002. This does not make a very good argument for better diagnostic tools and diagnosticians.
Also notable is that the rate in New Jersey was noted as high as 1 in 94 children (even with the above skewed data). The rate for boys was higher than girls in each state. Also, every "state" had an increase in their rate between 2000 and 2002.
More News Notes
A wonderful press release was issued by the National Autism Association last week. It is brief but concise. I encourage you to review it here: CDCís Vaccine Committee Whitewashed Toxic Vaccine Component, Says National Autism Association (NAA).
Also, UPI reporter Dan Olmsted has published an article investigating the link between Mercury and the first ever cases of Autism entitled Mercury Rising. I urge you to read it if you have not yet. You may also wish review some of Mr. Olmsted's earlier published articles in his ongoing series The Age of Autism.
This site was last updated 01/09/09