To Chelate or not to Chelate

            It killed her son, but she said she would do it again.   Her son is dead.  She will never hold his hand walking down the street.  She will never tuck him into bed at night…and she would do it again.  I think I understand why.   Her son was autistic, and so is mine.

             I stand at the end of the hallway at school watching my 4 year old son’s class being lead down the hallway.  He doesn’t see me.  Some days he doesn’t see me until I get right up to his face – those are the days when he is buzzing, literally.  He’ll make noises, loud humming noises.  He’s reflecting his environment.  Autistic people are slaves to their sensory systems.  His world is inside himself, and when the outside world becomes too much for him she shields himself with sounds.  I can’t get him to look me in the eyes.  I can’t get him to hear my voice.  He is elsewhere. 

            Most days aren’t that bad.  Most days he sees me and says his version of the word hi - which sounds more like a really enthusiastic “I”.  He has very few words, and those words don’t sound like they should.  I don’t know if he will ever talk.  I don’t know if he will ever be able to take care of himself.   I don’t know if he’ll ever have a friend much less a girlfriend.  I don’t know what kind of life he will ever be able to have.  So, I’m trying everything I can to make him better, we all are.  That is all the mother of the boy who died was doing – what she could. 

            She was putting her son through a controversial treatment called Chelation therapy.  Chelation strips the body of all metals.  Children with autism, my son included, are showing up with high levels of mercury in their blood.  Chelation takes all of the metals out of the system, and then the necessary metals (minus the mercury cocktail) are put back in.  It can be administered a few different ways. The boy who died was receiving an intravenous treatment.  My son’s doctor does it through a topical lotion, and I have also seen advertisements for suppository Chelation.  The idea is the mercury is causing the autism, get rid of the mercury get rid of the autism.  Bing bang boom – autism cured.  So called “experts” (the one thing I do know for sure is that there is no such thing as an “expert” when it comes to autism) say that it doesn’t work, but parents say that it does.  I don’t know what to believe.  Doctors say that it can be dangerous.  This makes sense to me.  The body needs metals and to take them out completely for any period of time can have long term effects on the kidney, liver and bone marrow.  So basically it is possible (but not guaranteed) that if he gets the treatment he will no longer be autistic.  But it is also possible that in five or ten years his liver or kidneys may give out.  It is also possible, apparently, that even the treatment itself could be dangerous enough to kill him.  

            So do I do it?  Do I take the risk and give him something that could potentially take away any shot he has at any sort of life?  Or do I just accept things for the way they are, and come to terms with the fact that this is who he is going to be?  I can’t.  I can’t just sit back and watch my son have diarrhea over and over.  I can’t just sit back and watch him break out in hives all over his body for no apparent reason.  I can’t just sit back knowing that there is an obvious physiological reason why he is autistic.  So, instead I search everyday for an answer to why this has happened, and what I can do to make it better. 

            All of the research focuses on how the mercury got there.  I can literally go down the list of all possible causes and place a check next to them.   Some research says it comes from fillings in the mother’s teeth.  Check -  I have those.  Some say it’s from mercury in fish.  Check - I ate plenty of tuna while I was pregnant.  I even went on a tuna kick where for about two weeks all I ate for lunch was tuna.  Brilliant.  Some say it’s from thimerisol, a mercury containing preservative in childhood vaccinations.   Check - of course he had all of those.  Then there’s a whole other school of thought that believes the immune systems of autistic children have been compromised by antibiotics prescribed too early.   I can even place a check next to that.  He was less than a week old when he was first prescribed antibiotics.   

            I think back to those moments when I may have made a decision that caused my son’s autism.  I think back to when I held him down as he screamed so the nurse could get good aim to shoot him full of vaccines.  Here kid, have some doom – it will keep you from getting some bumps that will itch and be really annoying.  I think back to my giving him the antibiotic.  He was a week old and had white spots all over his mouth.  I was freaked.  I was the prototypical frantic new mother calling the doctor, with my heart beating so loud I was afraid she’d be able to hear it over the phone line and my stomach so knotted it was concrete.  Then the antibiotic didn’t work right away, so I had to have the prescription filled twice.  Here kid…have some more doom, just in case things were going to work out well for you I’ll make sure to do everything wrong so that later on I can look back and not be able to tell which thing it was I did to take away your life.

            None of it really matters anymore though.  We live and learn and do things differently if there is a next time.  All of us with autistic children want to know why, but more than anything we want to know if it’s possible to make our children better so we do everything we can.  We research treatments; we pay hundreds of dollars and go to doctors that have claimed to have cured thousands.  We put our children on diets that take away essentially all foods that kids like to eat.  We make our kids drink daily cocktails of vitamin supplements, and everything the doctor gives us if they say it has worked for other kids.  The smell of Cod Liver Oil greets us every morning and puts us to bed every night.  Then we wait, and watch, perched on the edge of excitement – waiting for the words to come - waiting for that invisible film that lies over his mind, filtering out that mysterious thing that makes us able to communicate, to lift.  Hoping to someday be that mom who walks through the grocery store with the annoyed, bitter look on her face because her three year old is asking her too many questions. 

            I dream sometimes that he’s talking to me.  It’s always a normal day, nothing different, we’re doing the same things we always do, but we are also talking.  He sits and smiles and laughs and instead of unintelligible babble, the sounds string together and he speaks.   We talk back and forth, and in the dream I think nothing of it.  Then I wake up and remember, and instantly I feel the weight of my body in my bed, and the weight of the day that I know is coming.  Days where I make two or three different things for breakfast, hoping that he will eat something because he can’t tell me what he wants and because he can’t eat just anything – it has to be on the diet.  Days where he may or may not have continuous diarrhea.  Days where all I can think about is autism.  It is like a shroud that veils my life.  My first thought in the morning and my last thought at night is about autism.  I wake up at 4 o’clock in the morning sometimes (more often than not) and can’t go back to sleep because I obsess over finding a cure.  Even something as benign as going to the grocery store is tainted with it.   The cashier tries to say hello to my son and he doesn’t notice she’s there so she looks to me for an explanation.  I don’t want to explain that he’s autistic.  I just want to buy groceries. 

            The thing is though, I’m not alone.  Sometimes I’ll walk through the grocery store and hear a child babbling or doing some of the other characteristics of autistic children and I’ll see the mother who looks just like I do.  She’s walking a tightrope made of hope, like she’s so completely in love with her child that she spends every moment of her life doing all she can to make a connection with him.  She is desperate, and so am I and so was the mother who’s son died during Chelation therapy.

            I’m standing at the end of the hallway of my son’s school, watching him walk down the hall, unable to see me through the clouds in his mind.  I try not to allow the hurt to show.  Then I look around and see all of the other parents, watching their children walk down the hall without seeing them.  I hear the buzzing and babbling and see that all of the children are doing it.  All of them are lost in that bubble that keeps them away from us, and all of us are trying not to show the hurt that is so obvious on our faces it’s almost like a mask. 

            Will I risk all of the things that doctors say can happen if I put my son through Chelation therapy?  Could I live with myself if one day my son’s liver fails or he has to go through bone marrow surgery, or even worse, if he were to die?  The mother of the little boy who died during the therapy told a reporter afterwards that the results she was getting from Chelation were so good up until that point, if she had to do it over again she would put her son through some form of Chelation. 

            My son reaches me at the end of the school hallway and finally he sees me.  His eyes light up and I hear his version of hi.  He puts his arms around my neck and kisses me on the cheek, and I know there is a bridge that he is trying to cross.  There is something that is keeping him from coming all of the way over and I have to do whatever I can to try and help him. 

            Will I put my son through Chelation therapy?  How can I not?