Posts Tagged ‘chelation’

The Waiting is the Hardest Part

October 10, 2008

I can really relate to Tom Petty today. The waiting really is the hardest part.

I’ve been told time and time again that raising a child with autism is a marathon and not a sprint. We implement a therapy or biomedical piece and while we’d love to have instantaneous results, we have to let things take their course and see how they play out. I understand this. But it doesn’t make it any easier to have to be constantly waiting.

It’s not that I’m that impatient of a person. I can deal with long lines, slow internet access, waiting for the mail to arrive, etc. But when it comes to recovering my son, I wanted it done yesterday.

There are so many stories of hope out there that inspire me, but sometimes they scare me too. In some of these stories, it seems like dramatic things happened right away. Maybe a child was put on the gluten free/dairy free diet and they showed rapid improvement. Or that first B12 shot caused them to speak more words than they ever had before.

It’s not that we haven’t seen improvement but it’s definitely a slow climb. I don’t think we were naïve enough to think we’d recover Josiah with just one shot or one round of chelation, but I always thought, “Wouldn’t it be neat if we gave him one B12 shot and he turned to us and said, ‘Man do I feel better!’”

When things don’t seem to be happening I always worry. Are we doing this right? Is he getting all the stuff he needs? Is there something we’re missing? The fact that he just turned 3 scares me too as I realize how quickly the past year just flew by.

For many parents it’s a revelation years into their journey that they can do the biomedical treatments. We hopped on board almost immediately with the diet, supplements, restoring the gut, chelation, etc. He’s been in intensive ABA therapies for almost a year too.

We’ve had moments where it seemed like the payoff was coming. He’d do something new and we just felt like some major breakthoughs were coming. But then we always seem to hit times like we’re in now. Times of regression. Unfortunately that seems to be what happens with so many of these kids. Right now I’m just clinging to the advice of other parents and professionals that sometimes these kids have a regression right before a major breakthrough.

If there was only one way to recover a child it might be easier to know that patience is necessary. But I feel like that with every passing day we’re losing time and I don’t want to find out later that there was some big component I was missing. People always tell us that we’re doing way more than most people do. That used to make me feel better but it also freaks me out because I feel like we should be farther along then.

You definitely learn a lot about yourself when you plunge into the world of autism. I would have thought I was an incredibly patient guy in the past, but I’m slowly, very slowly learning to just take it one day at a time. I don’t do extremely well in that regard many days, but I guess I’m a work in progress too.

And I do firmly believe that we will recover Josiah some day. What that recovery will exactly look like I’m not quite sure yet. But I can’t wait to write some posts in the future where I talk about how we recovered Josiah and how other parents need to be a combination of patient and vigilant at the same time when dealing with their own recovery efforts.

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A Bloody Good Day

September 8, 2008

For some reason my blog entries seem to deal almost exclusively with the collecting of urine, blood, or poop. I guess everytime we have to get a sample it always ends up being a humorous, heartbreaking experience that is tailor made for a blog entry.

So I’m sure you’ve all been waiting impatiently to see how the blood saga turned out. You may recall from a previous post that we had a not so great experience last time out. I’ll cut right to the chase here and tell you that we tried again last week and it went quite well.

There are three locations of labs in our area that we can go to get this blood collected and tested. I’m not quite sure why we can’t just go to the pediatrician’s office or the local hospital, but I guess it makes it more fun to drive 45 minutes each way to do this. Driving that much kind of adds to the festive, carnival-like atmosphere.

We were down to our third and final location as the other two aren’t options right now. One of them changed to only afternoon hours which doesn’t work well around a toddler’s nap schedule. And the other one was the subject of the previous post when things went awry, so we weren’t keen on going back there too soon.

So it was off to downtown Minneapolis. The first challenge was just trying to figure out how to get there. I wanted to avoid any highways on the way there that were near St. Paul as the Republican National Convention was in full swing. We instead bypassed St. Paul and moved fairly effortlessly into Minneapolis until we hit the last exit available before the road ends where the I-35W bridge is being rebuilt. We had a long wait exiting off there, but not as bad as I had originally feared.

Going downtown brings the excitement of finding a spot in a parking ramp, which we barely managed to do. Somehow we lucked into finding the skyway which took us to the correct building almost immediately. Josiah had a blast running around the waiting room which was a change from our previous attempts when all he wanted to do was run around the hallways.

I was impressed with this office building more than the previous ones as this place had a sushi bar and a guy wearing a top hat in the lobby. I didn’t really need any sushi or a guy in a top hat this time around, but it makes me feel better to know they’re there.

We took another rickety elevator up to the lab and prayed things would got a little better this time.

This phlebotomist (I wish I had a cool title like that) did such a good job with the blood draw. She just exuded much more confidence than our previous phlebotomist (again, I love that title!) and was able to quickly find a vein, draw the blood, and bandage Josiah up in world-record time. By the time this phlebotomist was done, our previous one would have still been knocking things over. Even the needle this new phleb (my abbreviation) used seemed so much smaller than the scary-looking one the other gal likes to use.

Quick aside….I had to look up the word phlebotomist to make sure I spelled it correctly and to see if that was indeed the title. I also came across the world phlebotomize. Now that’s really a nice word. I need to use that in a sentence today with my co-workers, I think. “Hey, if you don’t get me that report by 5, I’m going to phlebotomize you!”

So now we wait till our next appointment with our DAN doctor to see what the results are and if we can begin the chelation process again. I’m sure our next blood or urine experience will be right around the corner, but for now I’m celebrating a minor victory with this latest experience. 

As gross as it is, I think a fecal (another great word) specimen would be the easiest to get. The blood draw is tricky for obvious reasons and the urine one is a headache because the collector bags are a royal pain. But the poop would just be right there for the taking. I’m sure it’s pretty gross, but it would probably be the least painful for all parties involved (except for whoever has to test it I guess).

What, me worry?

April 30, 2008

I’ve always been something of a professional worrier.

When I was little I was always worried about dying. All it would take was having a simple stomache and I would ask my parents, “Am I going to die?” “Am I going to be ok?” As I got older I graduated to more common worries that I suppose most people have like school, relationships, jobs, etc.

When my wife and I first got married, I actually wasn’t that worried about being a husband. It didn’t seem like rocket science to me. I knew it would take work, but I also knew that by doing the things that made us such a great couple before we were married (communication, prayer, etc.) that we would have an awesome marriage. And we have all these years.

But the thought of being a parent was definitely something that gave me cause for worry. I could wrap my head around being married, but being a parent? Now that was something I just couldn’t comprehend or even imagine that I’d be very good at.

When we found out my wife was pregnant, I was naturally thrilled…and also racked with worry! I had what I guess would be the typical first-time father worries, but also the nagging suspicion that somehow things wouldn’t work out for me like they do for most people.

In addition to the lifetime battle with worry, I’ve also had my share of esteem issues all these years. Where this comes from I haven’t a clue. I’ve always had an incredibly supportive family, teachers, friends, etc. and for the most part I’ve avoided any colossal failures throughout my life. But for some reason I always am convinced that I won’t be able to live the life that I imagine other people do.

This way of thinking has affected me throughout college, jobs, etc. I even remember being convinced that I would be one of the only people in the world who wouldn’t be able to figure out how to drive a car.

Anyway…back to the point I was trying to make. I was so worried and convinced that I would be a horrible parent or that something would be wrong with my child. So it was a great relief to me the day our son was born. I didn’t pass out in the delivery room. I was actually somewhat helpful and supportive in there too if I do say so myself. (This should have come as a surprise. During one of our pre-birth classes, we watched a video of a birth and when the baby’s head starting coming out, I leaned over to my wife and said, “What the heck is that?!”)

I was so relieved to see that my son had 10 fingers and 10 toes and that he didn’t seem to have any kind of birth defects. This doesn’t mean I still wasn’t a total wreck (I almost barfed/crapped my pants when it came time to leave the hospital) but I was gaining a little confidence.

In the weeks/months that followed, I still had my share of worries/anxieties about everything in life, but I felt like I was learning this Dad job pretty well. I was changing poopy diapers, getting him to eat, having a blast playing with him, etc.

For some reason, I did have this nagging suspicion that something wasn’t quite right, but everyone always told me that boys developed slower so I tried not to dwell on it too much. But of course, the good times didn’t last and we soon learned of our son’s autism diagnosis. While it seemed to me that everyone else I know gets to have this awesome parenting experience, my path suddenly would be much different.

So what’s the point of my rambling today? Well, if you’re a worrier/hypochondriac like me, then having to deal with autism really is not fun. Now on top of the autism, we’re dealing with all the toxic buildup my son has. It’s starting to really wear me down. In the past on a good day, I felt lucky to make it through without having a nervous breakdown. Now, this worrier gets to think about all things autism, toxins, getting toxins out of the house, getting my son to eat, etc.

This is probably the worst possible scenario I can imagine for the perpetual worrier/hypochondriac. Everywhere I look now I’m convinced something is poisoning my son. Even if we’re able to do the chelation effectively and get this crap out of his body, who knows how much junk is floating around out there that can still get in.

Fortunately for the world, I’m not a person with very destructive tendencies. When dealing with something like this, I can see where some people go off the deep end and do things to try to escape. I guess my only real vice for me so far has been a bit of eating stuff I probably shouldn’t. But unless I gain 200 pounds, I guess there could be worse things.

Sorry for writing a mini-novel today. You may be thinking that I shouldn’t ‘worry my pretty little head off.’ That might be sound advice, but unfortunately I’m bald.