October 4, 2014
The above picture is my son Victor and I couple years ago. Recently his treating doctor has been charged by the State of Washington that is directly related to my son. The charges came out in June 2014 and it took three years of battle to get to this point. This case is still open and the next hearing may be Spring 2015. The link below shows these charges. The post below the link is what I posted in April 2013 for parents to do their research! I hope that this story will help others stay away from the pathway we went.
*Since these charges of June 2014 they have increased the dosage amount of the herb gota kola from 6 to 10 capsules for a total of 4750 mg and as a mother I research everything they do because it is out of mainstream and I don’t like what I read about the potential of harming of the liver. This is just one example.
If you have a loved one with autism, you are blessed.
The journey our family has experienced with our son Victor (above in the picture with me) made us better people. He is more perfect in ways than “normal developed” people like us, whatever normal is.
If you are considering or are treating your loved one with autism by alternative care and/or D.A.N. treatments, please do your own research. D.A.N. stands for Defeat Autism Now.
Our son with autism is 18 now and was diagnosed between the age of 3 and 4 years of age. We have had so many trials and errors, and I hope sharing what I experienced will help you.
First of all, do not let a provider put you in a panic like there is no tomorrow. Do not let a provider provoke a fear in your head that was not there before. Do not panic. Slow down and get to know your loved one with love, fun and acceptance. You will have success with early intervention. Find any way you can connect to their world, and I guarantee you will learn from them.
It took me years to find the help I needed, so I will go over a few of my resources. I really hope you take the time and research ways to avoid harm’s way and dangerous treatments. If you are convinced that an alternative medical treatment is going to help your child, than please look at all your objectives and look at the resources below that have already helped us.
Our son has been treated by a D.A.N. provider for years. It is a common practice by D.A.N. doctors to have your loved one with autism on 20 to 30 supplements and some, or maybe all, support the Urine Provoking Lab test to test for toxins.
After our son was on many supplements I requested that we stop and slow down since 2 to 4 supplements were being added at a time. There is no way one can tell what supplement was working when you add so many at a time. Do you know what happened to our son when we suddenly stopped all the supplements after being on them for many years? Nothing! It was refreshing to find this article from a past D.A.N. doctor and his story. His link is below and he experienced the same thing we did.
After many years of being on the D.A.N. treatments, it did not matter how the cocktail supplements were changed, added or subtracted. Our son improved at the same slow rate with harmful reactions along the way. What is unfortunate, as you are experiencing a heavy mental and financial burden, you could have been using the time and energy to do proven treatments and spend more “quality” time with him. If you are using a provider that recommends to do chelation treatments or chelation treatments from the results of a urine provoking lab test, take caution. Below are links from the F.D.A. and State of Oregon Medical Board cautioning the public about chelation treatments.
After many years of restless nights knowing my son was being harmed and being in harm’s way I kept praying, knocking and researching. I am Victor’s mom, and I know him better than most. I have and had such a connection with my son that I knew when Victor was going to have a seizure before he had one. With that, it should validate that my fears were something to act on. When my son was on about 30 supplements, I searched for help on Autism Blog sites and did get it. I really got a responses when I put his treatments plan on twitter and asked, “Is anyone having success with this treatment plan?” One of my first responses was from two people with autism, and they were sickened by it and grateful for their support! Thank God someone reported me to Dr. Barrett stating my son is being abused. Then I saw one of my fears become real, and that fear was the urine provoking lab test.
If you are considering treating off the provoking lab test, please do your research first on this test and the link is below.
I have gotten great support and help from other people such as Dr. Robert Rust and Temple Grandin.
Dr. Rust is a neurologist who treats children with autism. When I emailed him looking for help and answers, I received this email from him:
I cannot provide a professional opinion about your son without a history and examination. But I am willing to comment in general about the DAN! approach to treatment of autism. It is based on theories concerning autism that are either entirely speculative or rely on “scientific data” that has been entirely discredited. Autism is a neurological systems entity with a wide range of degrees and manifestations and as in any such variable entity every person with manifestations must be treated as an individual with careful selection from among the manifestations as to how treatment (not only medical treatment but other appproaches) should be selected and then carefully evaluated to demonstrate effectiveness without side effects that outweigh benefits. It is likely that all forms of autism are, like all forms of human function and behavior, to some extent genetically determined. Some forms are proven to be almost entirely genetically determined (Rett syndrome is an example) and we now understand a great deal about how the “abnormal”: wiring develops and how it leads to “dysfunction.” I use quotation marks because if the whole world were populated with individuals with autism things might work out at least as well as they do for the rest of us. The problem is that 1) the world is not made up in that way and therefore some accomodations must be made for those with various forms of autism and 2) seizures and other problems that occur in some individuals with autism are disease processes that require treatment. I share your concern about doing so many things at once and some “therapies” for autism are dangerous and should not be used, such as chelation–the use of which is based on laboratory data from “DAN! approved laboratories such as Rocky Mountain Laboratory that is likely almost entirely fictitious. There are many child neurologists in the country who can provide excellent care for individuals with autism and they are the individuals that ought to do so. If you want some informatin that is useful to parents concerning these issues and are used to going “on-line” find the websites of Temple Grandin (who has a form of autism) and of a woman who calls herself “autism diva” who has a child with autism. Best of luck to you and to your son.
Robbert S. Rust, MA, MD
Thomas E. Worrell Professor of Epileptology and Neurology
Professor of Pediatrics
Director of Child Neurology
University of Virginia
I recently received an email from Temple Grandin and briefly told her about my son’s current treatment plan and this is her response.
Dear Suzy – Twenty-five different supplements is definitely excessive I have observed that the dairy-free and wheat-free diet helps some kids. Many parents report good results with fish oil supplements. Some of the other things that are often helpful are B6 and magnesium, and probiotics for constipation and digestive problems. You could try removing one supplement at a time. Change only one thing at a time so you can observe changes.
I hope the above information will help with your research. You are more than welcome to email me at email@example.com with any questions you may have.