This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Tuesday, November 3, 2009

Roo meet Mercury, Mercury meet Roo

When Roo was 2, it was clear that something was not right- he wasn't talking, screamed much of the time, avoided people, and seemed to be in his own world deep in his head.  He spent much of his time forming letters out of sticks or anything else he could find (it would be another two years before we would learn about Hyperlexia). We were assured that it wasn't autism- he appeared deaf, and we were encouraged to focus on his ears and his hearing ability.  The audiologist refused to test his hearing until we could get the impacted wax out of his ears so thus began The Battle of the Wax.  Who knew how tenacious that @#&! stuff can be?!?!

This precipitated Roo's one known acute mercury exposure (he is completely unvaxed).  After trying many natural approaches to getting out the wax, I carried him kicking and screaming for blocks to an ENT.  The man was incredible- worked like lightening, and was able to view the wax in both ears and do a timpanogram that showed that indeed the impacted wax was inhibiting the movement of the eardrum.  Problem solved!  Roo was fine, but just couldn't hear properly- as soon as we took care of the wax all would be well, he would suddenly begin to speak and socialize just fine.  Or so we were led to believe...but I digress.  We were given a prescription for eardrops that would Get The Job Done.  They contained all sorts of junk- several antibiotics and steroids, etc, but after all this was now nuclear war.  We just wanted that wax GONE and our sweet little boy BACK. 

How deceptively simple it all was.  What we didn't notice was that those drops also contained thimerosal (yep, that nasty stuff that is about half ethyl mercury) in the PARTS PER TEN THOUSAND!!!  This is stuff that is known to cause toxicity in the parts per billion, in a product that you put in your ears, which happen to be right next to most people's BRAINS.  Well, mercury and brains don't mix- not if you happen to be fond of the brain in question.  About half an hour after we administer the drops Roo woke screaming in the most horrible, terrified way I can imagine.  This was the screaming of a person being tortured- I am not exaggerating.  I can barely stand to think of it even now, 4 years later.  His eyes were huge and he was beyond hysterical.  We thought of taking him to the emergency room, but would they believe us?  We gave him some eardrops and now this?  And after all, these were the same people who thought it was such a great idea to put the mercury-laden drops in his ears in the first place.  Their credibility was shot and honestly they have yet to earn it back.

After about 30 minutes it was over.  We were so completely shaken.  When I spoke with Roo's doctor the next day she told me that it sounded like the drops had caused a seizure.  We''ll never know for sure what happened that night.  Many times I have kicked myself for not going to the emergency room, maybe they would have detected a seizure?  What we do know is that night it became clear to us that our crazy ride with Roo was just beginning, that things were not so simple as we had been led to believe, that if answers were to be found we would be the ones doing the finding, that all these experts- with all their fancy expert trappings- really don't now all that much, and what they don't know can hurt my child.

This experience, The Year of the Wax, was a foreshadowing of what our lives were to become.  It was the final stop in the world of familiar things, beyond which we found ourselves in uncharted wilderness, making our own trail.  That night when Roo woke in terror was a baptism of sorts- a sudden immersion into the terrifying loneliness of knowing that your sweet child desperately needs help, and yet realizing that there is nowhere safe to turn for that help.  That was the year that the smug, arrogant facade of conventional medicine came crumbling down, and we realized that they actually know very little of use to us in healing our son.  

While it was an end of sorts, it was also a beginning.  As it turns out we were not alone in that wilderness.  It is populated with thousands and thousands of families on a similar journey.  There are roads, and signposts, even guides, if you know where to look and who to ask.  Some even find their way out the other side.

As a postscript, when we finally insisted that Roo's hearing be tested despite the persistence of impacted wax, he was found to have exceptionally good hearing.  The one other bit of information that I will add is that warm soapy water is the most effective thing at removing wax.