Tuesday, July 29, 2008




For the first twenty-seven years of my life I managed to get away with visiting the doctor as little as possible. I've never had my tonsils removed, my internal organs are ship-shape; I dealt with little more than your standard childhood illnesses. I wasn't purposely avoiding them, but I definitely didn't spend any more time in the doctor's office than I had to.

Charlie's birth has thrust me head-first into a world with which I was previously unfamiliar. Unlike Kathryn, I haven't purchased any medical textbooks, but I have spent my fair share (and maybe more) of time on the computer researching Charlie, his specific diagnoses, prognosis for these conditions, and also finding families experiencing similar things and researching alternative treatments.

In my last post I indicated a little frustration about certain family members' response to the decision my husband and I have made to pursue alternative treatment. One of these people is a third-year resident/about to enter fellowship.

I thought I'd share my opinion on the current state of medicine, so those comments aren't misunderstood.

I think modern, western medicine is amazing. It saved my child. It continues to keep his heart beating correctly. It keeps him seizure free. I am deeply grateful for these things. I keep every doctor's appointment my child needs, which at last count was five. We never skip a dose of medicine or refuse a test.

What separates me from some, is my lack of dependence on doctors. I depended on a doctor once before and consequently gave birth to a very sick baby--and let's face it, sick is a euphemism.

I think that the thrust of our current medical environment is on getting rid of symptoms. Only in rare cases, does it look at causes. Pills and quick-fixes are the first line of defense. Most people are happy with this. Problem with your gall bladder? Cut it out. Something hurts? Here's a pill or a shot to make you feel better.

I also think our current system is slow and hampered by politics and money. I think our current insurance system has created a vicious cycle where things cost more than people can afford because insurance companies create so much paperwork doctors have to hire someone just to process and file it. I think words like "stem cells" make people close their minds before reviewing the facts. Did you know that in this country it's virtually impossible to have YOUR OWN stem cells put back in your body? Unless you have one of a few, specific diagnoses, you can forget about it. It's your own blood. You pay to store it and bank it, and yet in the US only one person in the whole country is willing to give them back to you, and that is in a research environment. How crazy is that?

My husband and I have done everything for Charlie that the current system allows and recommends. I've seen tons of doctors; we have five therapists, and soon we'll probably be adding more days to the schedule. All indicators are pointing to a life full of Botox injections and possibly other surgeries. A child with cerebral palsy can have a muscle-relaxer pump installed in their bodies, they can have their hamstrings cut, they can have rods placed in their spine, they can have the nerves running to their legs cut. They are at high-risk for hip dysplasia. It isn't a pretty picture.

There are no double-blind studies for ABR. It isn't covered by insurance. It's a risk and a gamble on our part to take our own money and pursue something that isn't proven by these methods.

But it's also non-invasive. The techniques will likely not bother Charlie at all. I will continue to pursue everything the doctors recommend. I'm not forgoing one thing for another. I am simply pursuing another option. Doctors may be experts in their field, but I am an expert in Charlie. It isn't acceptable to me that he could be in for a lifetime of preventable pain. Maybe I'm wrong. Maybe he'll need all those things anyway. I do know that all I have to lose is money--and money is replaceable. Hell, with my bargaining and Dad's AMEX points, our visit to Montreal will cost me less than three thousand dollars including ABR's fee.

So there it is. My thoughts on current medicine and the alternatives.