Posts tagged ‘biomedical’

You’ve got to have heart

     Someone recently told me, in regards to my own health (see here), that I had walked through a door that was now closed behind me. I couldn’t get that thought out of my head – is that what has really happened? Am I destined to take more pills than I care to count, wonder what’s going to set my heart off from moment to moment, and feel far older than I truly am?

     Then I met my new doc, who told me that I am like a boat. I’ve got a zillion holes, and water is pouring out more rapidly than my other docs can control. The traditional medical establishment is merely trying to use non-waterproof band aids on those holes instead of actually fixing the problem. So this new doc, whom I’m half in love with merely because he can help me, is going to rework me from the inside out.  

      It’s already started, really. One IV treatment settled my heart in a way it hasn’t settled in well over a month. I could actually take a deep breath without my heart catching the top of that breath with a shudder, and my heart stayed calm during the night when it is usually the most active. I am by no means healed yet, but that simple gift of a few days and nights of peace in my chest gave me more hope and faith than I’ve had in a long time.

     I’m reminded of the hope and faith I lost, and then found, when we started to try to help C with his health issues. We made the rounds of specialists over and over again – the neurologist, the developmental pediatrician, the geneticist the gastroenterologist; you name it, we saw it. No one could give us any answers beyond getting C developmental therapies, which we had already been doing for years. Finally frustrated with traditional Western medicine, I found myself looking outside that circle, something I had never considered before.

     We found success outside that circle, with a DAN! doctor (Defeat Autism Now!). Say what you will about the admittedly controversial idea of “defeating” autism in general, this doctor helped. I wasn’t thinking about the moral ramifications of “curing” an entire group of people who possess what some call a gift and some call a disability, which is what the discussion of DAN! doctors’ methods often turns into. I only wanted to help my child, and not so much with his autism as with his body, which I knew was sick. Our DAN! doctor didn’t do anything scary or even particularly outside the box – in fact, she worked closely with C’s gastroenterologist to help treat a GI problem we didn’t even know he had – she just prescribed to him a few well placed supplements that truly changed C’s health and life.

    Based on that, is it any wonder I would turn outside the establishment for my own questionable health? I find it interesting that so many of C’s supplements are now ones I’m taking, which simply furthers my feeling that I am on the right path. C and I are cut of the same cloth and pattern. He is me and I am him. So off I go on my own biomedical treatment plan with the hopes that it will make me as well as C is.

February 9, 2010 at 2:22 pm 7 comments

The things we share

     For the first six years of C’s life, I took care of him without pause. We were running the circuit from specialist to specialist doing test after test to do whatever we needed to do to get him walking, talking, and feeling well. Once we got past all that, it was time to get back to life. About two years ago, I started to take care of myself.

     For six years, I didn’t really get sick or worry about my own health in any way. Now, it seems, my body is playing catch up, and I’ve been down far more than I’ve been up lately. Whether it’s due to neglect or merely that the floodgates have opened, I’m not sure, but all of a sudden I feel as though I’m spending as much time in the doctor’s office as any self-respecting little old lady.

     What I find so interesting is that so much of what’s going on with me mirrors what we’ve gone through with C. Gluten sensitivity, multiple food allergies, breathing issues, joint pain, and even some possible heart problems all seem to be rearing their ugly heads. Even more interesting is that I’m exhibiting symptoms my mother started having at 60. Mine started in my late 30s, and C’s started at birth. It would seem that not only are some of the issues genetic, but that they are worsening with the generations.

     I feel as though I am the key to the issue, and C is the lock. If I can change the course of my own health, coupled with addressing C’s issues so early, will we be able to overcome our own genetic predispositions? I’m not sure who is the lab and who is the rat in this scenario, but we’ll continue running that maze over and over again in the quest to find the cheese.

June 23, 2009 at 9:52 am 7 comments

The truth is out

     Hi, my name is Darcy and I…like Jenny McCarthy. It’s true. I admit it. From the time Jenny unknowingly entered my radar screen, when I attended a party at her (then) in-laws’ home and saw the autism ribbon magnet on their fridge, I withheld judgment. I wasn’t completely sold until today, but she’s now won me over. My liking her doesn’t mean I want to get rid of vaccines, nor does it mean I no longer trust my son’s doctor.

     My theory on autism, which I find incredibly reasonable, is that there’s a genetic component which is triggered by some assault on the system. (Note the word “triggered” instead of “caused.” There is a difference.) Be it a virus, an overdose of antibiotics, an auto-immune condition, or a toxic build-up that finally tips the scales – I think there’s something. I think it’s likely different for every kid. I have, since the moment we started treating C’s medical issues instead of his autism, believed there is a medical component that goes with his diagnosis. When C’s body feels better, he functions better and he’s happier.     

     Jenny feels as though vaccines triggered (or perhaps caused, I’m not sure about her semantics) her son’s autism, and I truly believe that happens in some kids. Our experience was different as C fit his diagnosis at birth. There was no regression in our house. Yet I wish I’d asked more questions, slowed down a bit and read more in those first years. I would’ve still vaccinated, but I would’ve done it in a more reasonable way. I would’ve ordered a thimerosal-free flu shot when C had his doctor-ordered flu shots at 6 months and 18 months. Because truth be told, while I don’t think vaccines triggered C’s autism, I don’t think they helped much either.

     As I listened to Jenny talk today on “The Doctors,” which I only caught by accident, I was struck by how reasonable she sounded. I didn’t see a raving lunatic anywhere on that stage (except, perhaps, for the doctor that threw what we call in our household, a “fit”). All I saw was a Mom sharing things such as the GF/CF diet and supplements that helped her child (much of which also helped mine), complete with a cautionary tale about blindly following doctor’s orders without question. I find it difficult to find fault with that.

May 7, 2009 at 9:39 am 8 comments

Musings on Mothers

     As Mothers, we all try to do what is best for our children. We nurture them, make choices for them, and do what needs to be done for them. Sometimes this path is clear and easy, other times it’s not. With a special needs child, these issues are magnified, and I for one, find the path confusing and cluttered with wrong turns at times. I struggle to find the balance in providing all the things C needs, and frankly, there are things that slide by the wayside. We make choices every day about what we believe is important for him. Sure, we probably make some wrong choices, things that will make a grown-up C say “Why in the world did my parents do that?”

    What bothers me is the interference and advice from judgmental people who are not offering help and support, but rather criticism and condemnation. This goes beyond the well-meaning, forgivable stranger giving unsolicited advice. A friend with an autistic son was at a conference about autism recently, sitting in on a presentation about biomedical interventions. A woman behind her was looking over R’s shoulder while R was taking notes. “You’re not getting what you need, are you?” the woman said conspiratorially. “You should just love your child and stop trying to fix him.”

     I know of no other child, “typical” or not, who is more loved just the way he is than R’s son. My heart ached for her as she told me the story, because this is a Mom who cares for her son in every way. It’s hard enough trying to decide what your child needs without interference from someone who knows nothing about your child or your family. Yet R’s resolve was not at all diminished; she will continue on her path of trying to do what she, as the parent, believes is in the best interest of her child. Just like any mother would do.

May 13, 2008 at 12:07 am 1 comment

To be or not to be

     There is much debate over whether or not to “treat” kids with autism in the hopes that they get better. Some believe autism is an irreversible brain condition and we should all accept these children for who they are and not try to change them. There are others who will go to the ends of the earth to try every remedy out there (and there are many), searching for the holy grail that will “fix” their “damaged” child.

     We fall somewhere in between. We adore C just the way he is, and if his issues stayed the way they are we’d continue to feel blessed. We don’t think there’s one thing wrong with who he is. Yet we also firmly believe autism is a medical diagnosis that in some cases can be treated if the proper treatment can be found. C has real medical issues that contribute to his symptoms of autism. We are still working to get to the bottom of some of them, and while we know he will probably never be considered “recovered,” we can absolutely help him feel better. We don’t care if he recovers from autism, but we do care if his tummy hurts, his joints hurt, and if he just doesn’t feel well.

    I understand the position that we need to accept these children for who they are, but does that preclude us trying to make them feel better? Must the ideas that we can love our kids and that we can also help them feel better be mutually exclusive?


March 12, 2008 at 9:10 am 2 comments

It’s all autism, all the time.

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