Since I have been around the autism community for years now I have seen a lot of reports from parents of their experiences with doctors. Some outrageous, some great. Just like any field of expertise there are true experts and there are novices. I remained entirely respectful and professional with my exchanges with this doctor but I felt sharing it would help others realize that you can disagree with a doctor.
We went to see a chiropractor that is also trained in functional medicine. This doctor told me he treats autism, auto-immunity and some other complicated conditions. The only reason we went to see this doctor was for testing to rule out hypothyroidism and difficulty sleeping. These are common problems in children with autism and come from many causes. I suspected there were some nutritional deficiencies because of his self limiting diet and possible endocrine problems but without some lab work I’m guessing.
This doctor asked me many questions about behavior, symptoms etc and so on. He did a brief exam of my child and then said that he has inflammation in the gut. We have had many examinations by other doctors and this was never mentioned. After taking a lengthy history, he decides to order a some basic blood work, a SigA saliva test and a urine toxic metals test.
All of this sound reasonable except the urine toxic metal challenge. Inside I’m thinking, “oh boy, here we go”. I hadn’t mentioned metal toxicity at all. What happened to my inquiry about thyroid?
So anyway, I explain that my child has already been tested for heavy metals and is undergoing treatment. I offer to show the doctor my son’s hair test results. He insists that the hair test “isn’t” that reliable”, his words, not mine. I find this ironic since there are many research articles that say it is. (just check PubMed) However, before I can discuss the validity of a hair test he begins to tell me that “after 154 rounds of chelation your son shouldn’t have mercury anymore. So clearly the protocol you are using is not getting at the “cellular metals” or “something is preventing” him from detoxifying.”
At this point in my head I’m laughing now because he said “cellular metals” and I realize that he doesn’t really know what that means or he’s trying to use fancy terms hoping I don’t know what it means so he can convince me to trust him. And now I don’t trust him because all metals in your body are cellular…as in your cells.
You don’t have glob of lead floating around on its own in there!
To me I am more concerned that this doctor’s protocol is dangerous using high doses and probably does not use alpha lipoic acid to remove any brain mercury. I remain polite and explain that we use frequent low dose protocol which has been working well but because it’s gentle, it takes longer.
When I explain to him about frequent dose chelation he says he admits he has heard of it but he doesn’t use it because he doesn’t know anything about it.
Ah ha! I was right. He doesn’t understand frequent dose chelation and he was hoping to use fancy words to sell his protocol to me. I tell him I will need to think about his tests.
We take our lab results, pay the fee and go home.
This doctor wanted me to give my son 900mg of DMSA and several hours later another 900mg then collect urine. This is a dangerous. The fact that doctors would suggest such a thing immediately made me realize he had no idea what he’s doing. Simply to prove something to him that I already know which is that he is metal toxic?
I know I can safely run this heavy metal challenge test simply by collecting the urine for 24 hours on day 3 of a safe chelation round. But I am struggling with principles here. Why should I have to pay for this test, when we already have tests proving there is metal toxicity?
I already know the heavy metal challenge test is not valid or useful to begin with. Anyone will urinate out heavy metals if you give them high doses of chelator and collect urine. It’s meaningless as to body toxicity. Certainly says nothing about brain mercury either. Plus we’ve been chelating for a long time now, and he responds to it. That’s verification. what good is it to do the test?
I had already done my research years ago and I knew the hair test was valid and so is the protocol I’m using. I just could not convince myself to pay a few hundred dollars to do a test to appease him when I knew it was unnecessary. I knew I would not do his protocol anyway and I knew based on his attitude he was not open to discussion.
We did do the saliva SigA saliva test and the blood work. I told the doctor prior to our follow up that I would not be doing the urine metal challenge test at this time. So this was known prior to the follow up appointment. I was told that was fine.
I did receive the blood and saliva lab results in the mail before the appointment. So I had some idea of what issues there were.
At our follow up appointment, the doctor says to me that the blood work showed “some very riveting and not good things”. (Which is not making sense to me, because I’ve already seen the labs and there wasn’t anything riveting or not good)
He explains to me that laboratory ranges are based on sick people so you want all your results to be in the middle of the ranges. (well not all your results, some things really don’t belong in the middle) He tells me that the liver panel is not normal and indicates something going on with the liver, but he doesn’t know what without more testing. (This is not making sense to me because the liver panel was normal)
He explains that my child is not converting T4 to FT3. I can’t figure out how he thinks that when the lab never ran FT3 or RT3. We don’t even know what his Free T3 is, so how do you know he isn’t converting it? He follows this information with…”but he isn’t a candidate for thyroid medication”. (what?)
I ask about taking selenium to help with conversion of thyroid hormone. He says “you can’t just give supplements if you don’t know what’s causing the dysfunction”. (Um, well actually you can, and you should because in some/most cases you NEVER find the cause, but you feel terrible if you don’t supplement deficiencies).
He then wraps things up by telling me how terrible my son’s immune system is (based on what I don’t know because no immune testing was done) but he can’t make ANY suggestions at all unless we do the urine metal tests because he does not know if metals are the cause of things or not. So when I get that done, call and let him know and then based on the results he will let me know what other tests we need to run.
Since we had to pay for this 10 minute conversation about labs, I also asked him about the rash my son broke out in a week ago. He said, without even looking at it, “it’s probably his immune system”.
How can you tell if you don’t look at it?
I left feeling like I wasted my time and money because he refused to do anything until we agreed to run and pay for the urine metal challenge test. He knew we were not going to be able to do that test before we came in that day for the follow up. Seems someone should have mentioned prior to that appointment that he would be unwilling to help without that test.
He didn’t advise me to give any supplements despite the iron anemia and vitamin D deficiency my son’s test results showed.
I am confused….we already know metals are a part of the problem. I had brought 4 or 5 hair test results with me.
I felt like he was not hearing me or even considering what I was saying.
I wish I could say my experience is not that common but many parents report going to a doctor and not being listened too or not having their child’s needs met. Mine left with an untreated iron and vitamin D deficiency because I was not willing to do this test on my child and this doctor “requires” it to proceed. Isn’t it somewhat medically irresponsible to ignore two common know conditions?
Unfortunately for him and fortunately for my son, we did not go back to this doctor. I went home and put him on Vitamin D and a multivitamin and increase the iron rich foods in his diet.
My true fear is how many parents go into that office with autistic kids and don’t know that the metal urine challenge testing isn’t safe? How many of them do this guys high dose infrequent chelation and end up in worse shape?
- Live with Andy Cutler (theedgeofautism.wordpress.com)
- Updating The Edge of Autism (theedgeofautism.wordpress.com)