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Wednesday, July 11, 2012

J's last chelation

We had J's last chelation this weekend. Seemed significant and blog worthy.

One of this first books I read when J's was first diagnosed was Karen Seroussi unraveling Autism and Pervasive Developmental Disorder. Interesting because our library had approximately three books on Autism at the time and I swear the other two were those dam "10 things kids with Autism wish you knew". Which are about as helpful to parents with kids on the spectrum as a poke in the eye.

my first big book of bio-med

This book was a blessing, a real bio-medical treasure trove. It was what convinced me that J really HAD Autism (of course I had to tell the developmental pediatrician that he was wrong before reading that, of course). That book was the first book that made the connection between Autism and bowel dysfunction for me even though I'd been asked medical professionals for over a year and half why my kid couldn't poop. It was my ah-ha moment, or more like my oh-shit moment. Needless to say our bio-medical journey started the moment I read that statistic, 40% of kids on the spectrum had some type of bowel problem (and even that may be vastly under reported). Oh so that explains why my kid hasn't had a normal poop since he stopped nursing at one year old?! Oh so that's why all my google searches kept coming up with ulcerative colitis, and no feeding him more fiber did not help, (thanks worthless pediatrician who didn't test my kid for lead poisoning).

So I went looking for a DAN doctor. Looking up all DAN doctors in the state of Florida, calling for prices, nearly peeing myself at said prices, crying, reading, crying some more. I also began asking for references from other online bio-medical savvy moms. Long story short, we started DAN treatment in November the year of his May diagnosis. One of J's first comprehensive set of labs showed lead in his blood.

"Elevated lead in the body can be detected by the presence of changes in blood cells visible with a microscope and dense lines in the bones of children seen on X-ray. However, the main tool for diagnosis is measurement of the blood lead level or a urine test. When blood lead levels are recorded, the results indicate how much lead is circulating within the blood stream, not the amount being stored in the body.[2] There are two units for reporting blood lead level, either micrograms per deciliter (µg/dl), or micrograms per 100 grams (µg/100 g) of whole blood, which are both numerically equivalent. The Centers for Disease Control has set the standard elevated blood lead level for adults to be 25 (µg/dl) of the whole blood. For children however, the number is set much lower at 5 (µg/dl) of blood as of 2012[3] down from a previous 10 (µg/dl).[4] Children are especially prone to the health effects of lead and as a result, blood lead levels must be set lower and closely monitored if contamination is possible.[2] The major treatments are removal of the source of lead and chelation therapy (administration of agents that bind lead so it can be excreted).
Humans have been mining and using this heavy metal for thousands of years, poisoning themselves in the process. Although lead poisoning is one of the oldest known work and environmental hazards, the modern understanding of the small amount of lead necessary to cause harm did not come about until the latter half of the 20th century. No safe threshold for lead exposure has been discovered—that is, there is no known amount of lead that is too small to cause the body harm."

So quick paraphrasing, lead is REALLY bad for kids, lead in the blood doesn't actually indicate the toxic burden of the body, chelation is the treatment for lead poisoning, no amount of lead is safe.  J's lead was LITERALLY off the charts. His blood lead levels looked like my three year old worked as an automotive soldier for the last fifty years. So we started chelation, that was nearly three years ago.

We've done approximately one IV chelation per month for the last three years. Normally it doesn't take that long but we had to put J's chelation on hold pretty regularly for financial reasons, it should've take about half the time it's taken us to finish. I'll never forget his first chelation. It was a suppository, that was super fun, especially for a kid who was in the early stages of mega colon, getting regular enemas (again, thank you stupid pediatrician). My husband had taken the day off to help me with this lovely task. We had recently moved into an apartment to get away from the lead in our previous house that was poisoning our son. We had planned on going to the pool for a family outing after the dirty business to keep the suppository in and his mind off of it. So we did the dirty deed and finished getting the kids ready to go to the pool. As soon as we got to the pool (of course) the hubby and I got a wiff of J's odor.

Imagine seeing this in your kids diaper, it ain't lawn art anymore after that
Now let me explain something about Autism poops, they are WEIRD, they have unusual odors, textures, and frequency, trust me there are websites devoted to this topic (see . J's was no exception, so we just assumed he had gone without us noticing. That in and of itself was extremely weird, normally pooping for J required bribes, yoga poses, medication and liquor (the liquor was for me, take a deep breath). So I took him back to the apartment to change his swim diaper.

He had not pooped. His urine just STANK that bad (I even kept the diaper for hubby's inspection). It was another ah-ha/oh shit moment. Each chelation after that we had a similar stench which progressively became less and less pungent. With each chelation we'd see a bit more of J come back, the progress was incremental and slow but sometimes you'd see a jump, a look, a giggle that reminded you what he was in there.

Three years later I stand by that choice to do chelation. It was invasive and it was hard on not just J but our family. We sacrificed our free time (done on weekends), family time, money, sanity and so many other things I can't even begin to list but it was the right choice and I would do it again. All of the propaganda about vaccine's and other parents telling me I'm nuts can't take away the memory of that smell. The criticisms can't remove the times he would cuddle me after chelation. The hateful and uneducated comments cannot revert J's development of speech, (that happily coincided with lead and mercury removal from his body).

I know that chelation isn't the only thing responsible for J's personal growth (we'll call it that so as not to freak anyone out). To say that J has gotten to where he is SOLELY because of chelation is like saying that ONLY vaccines cause Autism. It's never that simple, as is anything in parenting.

Ironically, when we started our path into the Autism world I wanted nothing more than to walk out and never look back. Now that I have some perspective I think it may be too easy to forget. At this point we are working towards new goals constantly. J became unstuck, able to learn as his body burdens lessened and thus we have the luxury of new goals and forgetting. Now I know, I don't want to forget. Hopefully my son won't scorn me as an adult with Autism for my invasive treatments but if he does at least he'll have the ability to do so. I'll take that scorn for his ability to express himself.

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