As my son was going through the diagnosis process, I knew in my heart that he would get the diagnosis of PDD-NOS. He was almost 2 and a half. At the same time, I made an appointment with a rather well known DAN! doctor in our area. I was scared and clueless about autism. I was still in shock that this was my new reality. To save on the initial consult, we started seeing the assistant to the DAN doctor, whom I liked well enough. She did some preliminary testing, like the MTHFR gene defect, GI Effects and IGG/ IGE antibody testing. She also got us started on supplements and methyl B-12 shots for my son and later the CFGF diet. I read my sign-out sheets like they were my new Bible. While I found her to be helpful, and kind, I really wanted to see the big DAN doctor, the author of all those sign-out sheets and the guru I thought would cure my son.
Meeting the DAN doctor was a huge disappointment for me. First of all, the doctor started each visit by saying: “I had a good week; I cured three more kids.” I’m not kidding; he said that. He always talked about his exotic vacations and the underwater photos hanging in his office- charging us for the time, of course. He was constantly digging, trying to decipher if my husband played golf, and always asked about our professions and education levels. My husband and I spent every hour-long visit listening to him carry on about HBOT (hyper baric oxygen therapy) and he showed us videos and graphs from his past presentations. He also went on and on about his detractors- also at our expense, and these visits were not cheap. Never once did he mention my son. It reminded me of the one time I went to see a time-share presentation. Office visits felt like a sales pitch, not a doctor appointment for my son. I remember how ticked off my husband was. It was hard enough to get him to try all this unconventional stuff, but now that he met the doctor, my husband was constantly telling me, “I told you so,” and “This guy is in it for the money,” etc. But I was sticking to my guns; I was uncomfortable going it alone so soon. I kept telling my husband that each visit was just an “off” day for the doctor and the next visit would go better. All three visits were the same.
In total, we spent two visits listening to the soft chamber HBOT sales pitch, as the next step in his protocol was buying a soft chamber HBOT from him- for $20k. During our third and last visit with the doctor, I told him that I was looking into buying a used HBOT. At that time, he changed his tune and told us to forget the soft chamber, the real value was in his hard chamber, at his office- each round costing about $5k and over the next 2-3 years a likelihood of needing 4-6 rounds. Like I didn’t have any memory of the previous 2 visits and the urgency with which he had told us we needed to buy a soft chamber.
In the last visit I also mentioned that I was interested in Cutler’s chelation; he had written a lot about toxic metals and I had researched it on my own. Chelation was the next step in his protocol, along with the HBOT. Despite everything he wrote in his sign-out sheets; he told me that there was no need for chelation and that he cured plenty of kids with out it. After reading all his write-ups on toxins and mercury, he was now going to back track? I was done with this guy then and there. I quietly told him I wanted to get to the source of my son’s problem and left. I decided to “go rogue” and I haven’t looked back since.
About this same time, I met a mom of another boy in my son’s autism class. My son had aged out of early intervention, because he turned 3 and so he had just started the autism class at the public school. The mom and I talked briefly at a school function and exchanged emails. Her son was on the CFGF diet and so was my son at the time. We decided to get together for a play date at my house. After leaving the DAN doctor and getting only moderate results with his protocol, I was seriously considering chelation. I asked her point blank if she had tried chelation or knew anyone who did it. To my surprise, she told me that she was currently undertaking chelation therapy with her son. I owe her a million thanks for giving me information on Cutler’s low/frequent dose chelation protocol. I am so relieved that I never tried chelation through my son’s DAN, who only provides IV chelation and challenge testing, both of which are dangerous and in my opinion should not be attempted.
That mom got me started on the therapy that has proven the most beneficial for my son. I was scared to try it, but I also realized that a lot of the moms I had talked to who recovered their children did it through chelation therapy. On Autism Research Institute’s website, chelation has the highest parental rating for success. I truly believe that chelation therapy gets to the root of the problem with these kids, which is toxic metal overload coupled with a reduced ability to detoxify. How could I not try with my son?
