Monday, February 04, 2013

Why Doctors' Appointments Are My Own Personal Hell



I hate going to Malachi's doctors' appointments.

Hate.

They are like my own personal hell, a perfect storm of circumstances to drive me completely nuts.

First of all, I have to go to them with the twins. They are screaming and wildly frustrated two-year-olds who want to grab everything in sight. No doubt, they also pick up on my nervous energy and act even worse than normal. While all this is going on, I have to give a full, brief and accurate oral report on all the various facets of our care for our son while simultaneously trying not to scorn the established view of things and explain how our alternative philosophy accounts for all of their concerns.

Then comes the worst part. The part when the doctors tell me their recommendations. I know intellectually that this the entire point of a doctor's visit and that they are just trying to help me and give me the tools we need to succeed. I know this. But with every recommendation I feel just a little more inadequate. It doesn't matter that I've turned my entire life upside-down for Malachi's cerebral palsy, traveled the globe in search of the best treatment and raised tens of thousands of dollars for it. There's always something I'm not doing and doctors' appointments are when somebody sits there and tells me that to my face.

The major focus is usually food. Malachi doesn't eat enough of it, which is a big problem, but I just don't know what more I can do about it. While he doesn't eat nearly the varied diet that JJ does, it's not that much different than what I ate as a kid. (Another reason why doctors appointments are my personal hell: all deficiencies in Malachi are fair game for treatment. Other people's kids just get to be picky eaters, but because the pickiness is added to his CP, it's a Big Deal.) And he does eat. Unlike many other kids I know, he would gladly down calorie-rich PediaSure all day long.

Adding "Make wholesome, fresh, nutritious baby food from scratch" to my to-do list — which includes "Single-handedly make, market and distribute a profitable book series," "Keep clean, organized and well-run household" and "Raise two boys into well-rounded and self-actualized young men" — just seems impossible.

I also hate that they call everything into question. I've already gone down this path and have done exhaustive research on it. And yeah, you should always check your assumptions and you never know if a different way would be better... but I'm already so far down this path. Imagining reversing all the monumental changes I've had to make in my thinking and my life just seems too daunting.

I guess the problem is that my entire life has become Malachi's CP. I read constantly and widely and I already know what the doctors are going to say and why, but I still don't agree with most of it.

All I want is a doctor that I can ask questions to, one who "gets" where I'm coming from without my having to explain the last two year's worth of my understanding about how the brain learns. They would get it, I'm sure, but it would take time and energy that I just don't have.



***

BTW, these are a bunch of links to awesome things that might help you when you feel like giving yourself a temper-tantrum. Thanks to my Facebook friends for contributing them when I was having a rough day. I was going to incorporate them into the above post. But then I didn't. One more thing to not cross off the to-do list....


http://www.ahaparenting.com

http://www.lindasdailylivingskills.com/2010/11/just-right-challenge.html

http://coreparentingpdx.com/2012/when-mama-has-a-bad-day/

http://specialchildren.about.com/od/stressmanagement/tp/How-To-Give-Yourself-A-Temper-Tantrum.htm

Stumbo Family Story

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15 comments:

  1. I'm sorry you find them so frustrating. They're never a picnic.

    J has trouble with food, too. At seven, he is almost four feet tall and he barely weighs 30 pounds. Every doctor pushes a nutritionist, because he's technically labelled as Failure To Thrive now. We've seen three nutritionists and they've tried a dozen ways between them to get the boy to gain weight, including calorie supplements that made him gain weight, but we're so hard for him to digest that I had to take him off of them after two months.

    They can make all the suggestions in the world, but getting past the tongue thrust is hard. He can't have anything even remotely chewy unless it's small enough to swallow, and he's sensitive to dairy and soy (so Pediasure and the soy version were right out the window pretty early). He gets a lot of pasta cut into tiny pieces, as many mashed soft-cooked veggies as I can manage (I overcook a portion of whatever the rest of us are eating and mash it up), and lately I've been sneaking bacon fat into as much as I can in an effort to help him gain some more weight and get on the dang growth chart for the first time since infancy. (Bacon fat is mostly the same kind of fat found in olive oil, contains vitamins, and is easy enough to save; I just pour it off into a jar and keep it in the fridge.) And his metabolism is lightning fast for a kid who can't move around on his own. The boy eats like a horse - as much as I do, at every meal, plus three snacks a day. His caloric intake for a day is close to 2500 and he's still a twig.

    Hang in there, Mama. You're doing great.

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    1. ... "we're so hard for him to digest" really ought to be "were." I promise I know how to spell and use grammar.

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    2. WOW! It sounds like you are doing an amazing job getting him to 2,500 calories with tongue thrust! Thankfully Malachi grew out of that but he still has trouble swallowing.

      Have you heard about the Preemie Growth Project? It is having some phenomenal results with getting kids to gain weight (and function!). You take this supplement that allows the child to absorb the nutrients that he is eating. The study is closed, but they tell you how to do the same thing on the website: http://www.preemiegrowthproject.org

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    3. I hadn't heard of it, but I'll definitely look into it. He wasn't a preemie, which is probably why. (He "got" his CP when he was shaken by a caregiver when as an infant.) Thanks for the recommendation!

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    4. Yeah, it started out for preemies, but they are seeing success with lots of other kids.

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  2. That's rough. My CP son is my sixth kid, and I think the fact that I am old and experienced makes me care less what doctors say or do or what they think of me. They're just practicing, and I am doing all the work, so I take them with a grain of salt. But I also have had some bad doctors and I HAD to make changes, about one year into our CP journey. We switched all his care to another city. Best thing we ever did for him and my mental health. Is there anywhere else you can go?

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    1. I dunno. I've tried four different developmental pediatricians and they all drive me nuts. I think it's more me than them.
      I think you're right about taking them with a grain of salt, but then a voice inside my head says "why even bother going to these appointments if you're just going to ignore what they say?"
      I've always had a hard time ignoring other people's expectations of me.

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  3. "And God is able to make all grace abound to you, so that in all things at all times, having all that you need, you will abound in every good work." 2 Corinthians 9:8

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  4. Amen, sister. Sarah Kate would never gain weight when she was little, no matter what we did. The pediatrician at every appointment would provide suggestions and after awhile I would just nod and pretend like I was going to follow them. Well, guess what? She's ten now, eats as much or more than I do, and she's still a beanpole. Whatevs, Doc...

    The PT has also been pressing me to take her back to the ortho, as is my dad for some reason (I believe he thinks heel cord lengthening is more of a panacea that it actually is). His office is 250 miles away and I know what he's going to say: "Let's wait a little longer before we do anything."

    Then there's Nathan. We are a year overdue on seeing the ophthalmologist because I hate him (and I only went once). The second appointment I sent Mr. Andi, who also hated him. So now we have to decide if we'll go back to the guy we hate or go to the one our ped suggested when we told her we hated the first one (thank goodness we have a ped we can say things like that to...) - #2 is an hour away, of course.

    And finally...the therapists. They are super nice, super caring, and over the years some of them have become our friends. But O-M-G at the guilt.

    It all makes me wish our family lived on a farm in the 19th century where we didn't have to rely on conversation skills with "the public" every day and we didn't have to face the educational expectations and we could just grow our food and live our life without all of the other crapola.

    And my, oh my, I believe I have written a new blog post... :)

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    1. Andi, yeah, it's really bizarre, isn't it? How doctors give all of us all these suggestions to stuff their faces with as much fat and protein as we can but they still never gain weight. Whole legions of special needs moms/dads feel like they are failing their kids because they're not gaining weight, but really there's nothing they can do about it. I'm becoming more and more convinced through this Preemie Growth Project thing that it's an absorption issue and not a matter of how much food they eat.

      I hated our ophthalmologist too. They made us wait for 2.5 HOURS with TINY preemie babies to look in their eyes and say "I dunno. They might be blind, but they might not be." Thanks, doc, I'll be sure to rest easy tonight. Thankfully our last appointment they said they're fine and we haven't needed to go back since.

      LOL, I have the same feeling about living on a farm. Let's make a special needs compound, shall we? If everybody has kids with SPN, who will be "normal" and who won't be?

      ... hmm... looks like I've just come up with a new blog post! ;)

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  5. I'm with you. I HATE that Julia isn't allowed to have one little thing that is simply related to HER, a quirk that she would have regardless of whether she had CP. I hate when doctors and therapists make judgments about her based on an hour a week meeting - I feel like if I contradict them, they'll dismiss me as just not wanting to believe that she has one more problem.

    The only area I don't get grief on is her weight - she's 38 1/2" and hovers between 32 & 33 lb. She's skinny, but Gabrielle is only 4 lbs heavier and 3 inches taller. When you adjust for height, Julia is actually heavier. They both apparently have fast metabolisms, which they inherited from their dad, who is 6' 4" and thin himself - and since he's come to all major appointments with me at least once, they all know it.

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    1. You're so lucky that Julia eats so well!

      And yeah, the docs and therapists can get annoying with all their over-diagnoses. I always wonder how they really know what's typical and what's atypical when all they see all day long is atypical.

      It's funny, one time our PT said exactly the same thing. A kid came in for a consult and he was scratching his head trying to figure out what was wrong. The guy who referred him said "So, what do you think?"
      Our PT said: "I don't know."
      The other guy said, "Yeah, I think he's normal too."
      And our PT smacked his head and was like "oh! That's it! He's normal!" ;)

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  6. Hello Shasta,
    I just found your blog through your Anat Baniel tags. I know your struggles with mainstream doctors and therapists. A key to remember is that it takes about 25 years for the newest research to get into the mainstream. And if it is not information pushed by big business, then it may take even longer. Also, methods that truly utilize parents as partners and practitioners are contrary to the "expert" culture we live in. They are trying, but don't even know how maddening their assumptions are to proactive and informed parents. And they will NEVER know your child like you do, or invest as much as you do. Good luck sorting out the good advice from the useless, you are on the right track.
    Beth in Minnesota

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  7. Hi Shasta,
    I just found your blog, and it is great. I am an Anat Baniel fan too. Good luck as you work a miraculous treatment program in a bogged down world. And keep on writing!
    Beth in Minnesota

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  8. Hey, Shasta.

    I just found your blog tonight. I'm so glad. How comforting to find someone who speaks our "language". I totally understand about the dr. appts. I just wrote a post on my new blog regarding getting botox shots earlier this week. My daughter's peds dr. is so clueless. She's never on board with what is really going on for us. I say kudos to you. Keep on keeping on. Thanks for sharing your insight.

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