Friday, December 5, 2008

Chelation... My thoughts.

I've been wanting to blog about chelation therapy for a long time, but felt like I needed to research more to understand fully what is entails. I thought perhaps it would not be as horrifying as I had thought, if I understood it more thoroughly. So I spent a couple weeks reading up on it. The pros, and the cons, the how's and why's and who's. I came to this conclusion... It's as unnecessary, unproven, and potentially harmful as I thought. But the research was enlightening. I had not know that there was oral chelation. I assumed it was exclusively IV administered.

In those couple weeks, I never once found a single article showing scientific proof that chelation did anything for an autistic child. I found a lot of doctors and alternative health sites promoting it, mostly using McJenny as a selling point. Did she even use chelation? I'm not sure. She seems to be the sole source of "scientific" proof for most of these types of practitioners. You all know my opinion on McJenny. I'd listen to a McNugget before listening to a word McJenny has to say. Not simply because I disagree with a lot of her agenda, and her wild claims that her way can cure all autistic kids, but because she is drowning out the voices of people who have a clue.. Oh boy, i need to stop and get back on track. this is not a McJenny post.

Ok, so from what I read, chelation is done by giving the child a chelating agent, either orally or in an IV (usually DMSA, from what I saw). This agent enters the bloodstream and binds to heavy metals in the blood. Apparently it also binds to Calcium, which seems like it would be very bad for kids, especially tiny ones like Jaymes, who need as much Calcium as possible. Anyway, the heavy metals and chelating agent are then excreted from the body by way of urination. It can take between 2-4 hours per treatment, and some people will treat their kids DAILY.

All medical issues aside, in what world is it appropriate to force a child to be still for a treatment (even if they can play or whatever at the doctor's office, I would hope to god their don't send kids home to chelate without medical supervision.. though it would not surprise me much...) for 2-4 hours? An autistic kid? Nope. that in itself would be torture for Jaymes.

Then there is the basic premise of this therapy. It all goes off the -unproven- theory that Vaccines cause autism, because they contain mercury (which they do not, anymore). Basically the only "proof" these people have is what their patients have said. Sorry, but that's bull. Desperate mommy gets convinced to try this miracle cure, and afterwards is asked if kid is improving. She is desperate. She wants it to be true, and she sees improvement where there may or may not be any. You cannot rely on a parent to evaluate the effectiveness of a treatment. I know my child, but I do nt have the trainning, or unbiased opinion to be able to say "well, this was beneficial." or "This was a waste of time, there was no benefit to this treatment." We see what we want to see- we want to see that something has helped, and we will see things that are not there. Of course those docs are all for agreeing with the parents, after all, the parents are furthering their cause- and giving them money. Generally chelation is a self pay therapy. No insurance covers uncessary, intrusive, potentially dangerous therapies, not even Medicaid. After working in medical billing for awhile, I've learned that self pay patients are the doctor's FAVORITES, because doc names the fee and they have to pay it. There's no messing around with insurances, taking lower fees, etc...

One very interesting thing that came up on google when I was looking up info was this... The NIMH had proposed a study to see if there was any validity to using chelation to "cure" autism. thank god for sensible people is all I have to say. They canned it, deciding that because “there was no clear evidence for direct benefit to the children who would participate in the chelation trial and that the study presents more than a minimal risk."

Our scientific community needs to concentrate on "real" research. I'm not saying ignore biomed totally. I think vaccines can always be made safer, and that there should be a constant drive to improve more and more. I do not think that the folks advocating (and rabidly attacking parent who are looking for answers) "NO MORE VACCINES!!!" are doing anyone a service. We need our vaccs. We just need them done safely. Spread them out over a longer period of time. Keep the research going to make sure everything in those vaccs is safe, and will not cause harm. I do not deny vaccines can cause harm, but I refuse to believe the unproven theory that they cause autism. Kids have vaccine reactions- look at Sierra's hospital stay a few months ago. That was without a doubt vaccine related. But guess what? She's still not autistic.

Another thing that bears looking into is dietary interventions. I'd love to see some real scientific studies on the GFCF/Feingold/ETC diets. I'd love to see Medicaid and other insurances one day cover those costs for those of us who cannot afford to feed our children purely organic, healthfood store stuff.

How about some more genetic studies? Lets figure out what causes autism, and how to cure it. And no, I don't mean with miracle vitamins, foot baths, and chakra releases.

Medication studies. So few meds are approved to treat kids with autism. What about finding more, safer drugs with less side effects? How about we learn some more about treating kids under 5?

There are SO many better things NIMH could research, thank god they realized this and did not waste time and resources on a worthless cause like chelation. Thank god they realized the risks involved. Good for them.

We need to take a step back and look at the big picture. Stop bitching about the pharmaceuticals. they're really not out to kill all our children and steal the billions we throw at them. If they were, they'd simply pop some arsenic in the vaccs and be done with it. Regardless of what causes autism, why obsess over it? How does it help you to know why? What, get some free cash off the pharma companies when you sue for the "vaccine injury"? That doesn't help your child. We don't need to focus on who to blame, we need to focus on helping our kids live better, fuller lives.

In other news, Jaymes is doing pretty well. he's been having weird manic moments where he flails around so hard he hurts himself, so we have d/c'd Risperdal and started Clonidine. It seems to sedate him for a bit, then wear off. It is a 4th of a tablet though, and the tablet is only .1mg. So, tiny dose. We'll see how it does. I don't want him so sedated he isn't him, but i also want him to stop hurting himself and tearing up everything in sight!

He's been talking up a storm, and loves his Goosie Cards. There will be a blog about how he's using those pretty soon here.. He gets it though, and he loves the cards. He's doing well in therapies, and in school. He went poopy in the potty at school, but here at home we are not having any luck. Sierra spends a lot of her time on the potty, lol.

Getting geared up for the holidays.. Gotta get the Xmas tree and get some decorations up!


" JUST US " said...

I agree with everything you are saying 100%. I also like how you renamed the McJenny person. I've watched her talk on a few talk shows and It's the same thing she says over and over again. I personally don't think you can cure what our boys have. I just think they get better at adapting to this neuro typical world.

tara @ kidz said...

I found you through momdot and I'm glad I did. I found this post soooo interesting and I will back ya on those studies and research! More definitely needs to be done about these issues.

My daughter has West Syndrome and I've recently been told she probably has autism as well. It's so nice finding other people and knowing I'm not alone in this adventure. Thanks!

Princess Fiona said...

As usual I agree with you too. Here in Australia we don't have any mercury in any of our vaccines and yet Fletch still has autism... hmmm how would chelation help that then??!!! And whilst I do agree that our governments need to pump some serious money into researching a cure or a treatment, I still think they need to research the cause AND THEN do something about it because we really do need to put a stop to the massive numbers of kids being diagnosed so other families don't have to go through this as well.

cheers to you though, well said.