Happiness by proxy

that DAN doc consult left me feeling
something like this.

Sadly, I was wrong about Jonathan's last chelation. On our last phone consult with our DAN practitioner I got the news he STILL has lead in his body per his last set of labs. I called my husband the day of the consult and desperately tried to hold back the tears while I was driving. I was consumed by grief, sadness over our future lost happy weekends, gone to chelation and the money, expense and aggravation spent to get there. One reason I love DH is his never ending optimism when it comes to J. He said to me, in a voice as calm as a still lake, "well that means he can improve more, so we'll do it". At that moment my tears dried and I calmed, shook by his insight. He was right, more chelation meant more room for J to improve. So I tucked my tail between my legs and accepted the fact that we have more chelation for J to complete.

Yesterday was our third chelation back on schedule. While most families are dressing in their Sunday best to go to church, we were packing the cooler with snacks, grabbing books and DVDs, and sending the kids to the bathroom for one last bathroom run. All hail Autism recovery, our sole religion. We got on the road late but since we've driven the route so many times we made excellent time. J took his IV like a champ and we were in and out in a flash. This process is getting easier on him too, thank god for that.

After chelation yesterday we went to the beach. The beach we visited is about an hour south of where we live. We would never normally take the time to drive there. We just happened to be in the area for J's chelation. It was a stunningly beautiful day. The beach has a marble mix of white and black sand, crystal clear aquamarine water and had a sky that exemplified the color "sky" blue. We swam, splashed, frolicked, hunted for shells and sharks teeth and had an effervescent time.

Oh gluten, you dirty, dirty gluten!

As we drove home feeling sun weary but soul sated this thought burbled up to my conscious thinking. I'm beginning to enjoy J's chelation and IVIG. Don't worry, its not "the enjoy like putting Pine-sol in my kids oatmeal, kind of enjoyment", its more like, that is our only family time and we are making the best of it, kind of enjoyment. I think unknowingly we've begun to make the most out of those days. I've come to relish the "after" time. I enjoy the side trips to the beach. I enjoy the snuggles, movies, and chocolate cafeteria cake (which I would never make at home, contaminate my cookware with Gluten, please) during IVIG. I enjoy the ride to and from our IV destinations, it gives hubby and I time to talk. I enjoy talking to the nurses who know us, and appreciate our situation. I used to gnash my teeth with worry the night before an IV for J (don't get me wrong I still HATE it) but as time goes on it gets easier on him and easier on us as a family.

Now I think (think being the operative word here) that we have less than one year left of chelation. I don't know how long he will have IVIG. This time around I've decided to take as it comes. I'm deliberately taking my eye off the finish line to focus on the people and scenery around me and I plan to relish them both.

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 http://gfcfpoop.blogspot.com/) . 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.