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.

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  1. You don’t have to explain anything to me. Like you said, you are the expert on Charlie and I believe in you 100%. I totally believe that a mother can know things that other experts are not able to so go with what you feel and look at the alternatives.

  2. Very well put. I had never thought of it that way–symptoms are treated but seldom is the root of the problem looked into.

  3. Jessica says:

    Wow! Great post. Have you looked into the ST Louis Children’s hosp? Dr Parks is one of the US’s greatest SDR surgen. A few people from babycenter’s cerebral palsy blog have checked into it and 1 family has had their daughters there. We see a neurologist there, and love her. It’s a 6-8 hours drive for us, but well worth it!
    Thanks for that post. You’ve given me something to think about.

  4. “Doctors may be experts in their field, but I am an expert in Charlie.”

    Absolutely correct, my friend. I have said that many times about my son. No one knows him better than his own mother.

    This is a great post, Katy. Totally agree with you.

    Here’s wishing you and Charlie all the best with the ABR. Forget the naysayers honey. You’ve gotta do what you feel is best.

  5. Elizabeth says:

    I think you guys are doing a fantastic job picking and choosing what’s best for you and your family. Stay strong, stay focused. *hugs*

  6. Princess Abigail says:


    I couldn’t agree more!

  7. Small Town Girl says:

    I think you owe it to yourself and Charlie to explore all your options. Good luck with everything!

  8. Mannyed says:

    there’s always going to be someone out there making comments about your choices. It doesn’t matter if you’re planning a wedding or raising your child – someone is going to have a remark or opinion about the way you are handling things. You need to do what you need to do. You def do know best.

  9. Barbara says:

    I agree with the previous poster. Someone is always going to make a comment or disagree with your choices. But it doesn’t matter because YOU are the Charlie expert and you decide what is best for him.

    I too am considering trying alternative treatments. I agree with you – modern medicine is great, but they don’t necessarily have all the answers. As long as something won’t hurt, I’m willing to try even though I may be skeptical.

  10. Jessica-my research has shown that St. Louis Children’s Hospital is the place to go if you need a selective rhisotomy. Luckily, we’re not there yet. Thanks for your input.

  11. GreenieWeenie says:

    Go for it. It’s your child. Who says you have to accept the limits of the practice of American medicine? Why *not* glean the best from whatever’s available, whether it’s found within the confines of the US or not..? I wouldn’t even contemplate feeling guilty or apologetic over it – or even defensive. :)

  12. I agree totally with your post and am thrilled about your decision to pursue ABR.

  13. White Hot Magik says:

    Excellent post.

  14. A standing ovation here, for you. Go Charlie and go Charlie’s mommy.