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January, 2012

  1. Sweat Test, Not So Easy

    January 7, 2012 by Michelle

    Ok, so this post is about the sweat test, which we did to rule out cystic fibrosis, but I’ll start with something light from our visit.

    Just before the test, I took Bunny to the family restroom to change her. It’s a nice restroom with an adult height toilet, a kid height toilet, & a changing table. After I change her, I put her down on the ground so I can throw out her diaper. In about 3 seconds, the following happens:

    Bunny dunks her hand in the kid toilet. I hear the splash and say, “No!” quickly pick up and throw her sippy cup (instead of diaper) in the trash. Reach in to get it back and turn around again to her splashing saying, “water!”

    It was almost a nice, funny little moment before we started in on an hour-long test.

    Sweat Test Procedure, 20 Minutes of Screaming

    Once we washed hands after the toilet incident, it was time to get started.

    While the test shouldn’t be a painful one, the first 20 minutes or so was miserable. The test was in a similar room to where they draw blood, so the crying started when the technician started wiping her arms clean with water.

    After cleaning, the technician placed two metal plates, with a piece of gauze in a solution to encourage sweat underneath, on her arm. Then she attached electrodes to each one and turned on a light current (which can cause a tingling sensation) for 5 minutes. I got to hold her and the free arm down, the technician held the arm getting stimulated.

    This is when the technician brought out the iPad. While a cool concept, (they have a few kids apps loaded up and it’s wrapped in plastic to clean between kids) bunny wasn’t interested. We got a few seconds distraction at one point, but it was pretty much red face screaming, crying, and drooling.

    After 5 minutes of stimulation, she removed everything and taped a special sheet to her arm to absorb the sweat. The technician then wrapped the arm in a blanket.

    Then, it was time for arm two.

    Waiting for Sweat

    We left the room, two arms wrapped, and instructions to wait for 30 minutes. I quickly found a place to sit and nurse. Thank goodness for still nursing, cause no saying how long it would have taken to calm her down otherwise.

    After that, we managed to relax and I even got some smiles out of her. 🙂 Here’s a photo from our wait with the giant armbands. She’s looking out into the open lobby area at CHOP.

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    When it was time, the technician came out to get us. Bunny was walking in her direction, saw her, and turned around. Smart kid.

    Anyway, the technician said it looked like we got enough, so hopefully we’ll get a conclusive result this time. Hopefully results come Monday.

    Update Jan. 14, 2011:

    Test results came back normal, not inconclusive, normal. No cystic fibrosis. Phew.


  2. Opposite Eating Habits

    January 5, 2012 by Michelle

    Our visit in December with the GI & nutritionist was the least painful yet. No blood work was truly a blessing. But, while she did gain weight, it’s still not enough. Then two weeks later we had a well visit and she was down two ounces, and her head shrunk. Ok, her head didn’t shrink, but the nurse at the well visit measured twice, so the last two must have been off.

    Latest stats:

    Age: 19 months
    Height: 2′ 4.75″
    Weight: 17 lb 10.2 oz
    Head Circumference: 17.76″

    Even on the WHO chart that weight puts her below the 3rd percentile line. CDC = 0.03 percentile.

    I was told not to worry about the two ounces, the holidays would have thrown off her eating and with me home from work she was nursing more, a good thing, but maybe less inclined to eat solids (true! She was attached to me more than before I went back to work some days! I think she’d save room to nurse.)

    But all these fluctuations are a reminder that the tools to measure are imperfect, too. And different scales & different people give different results. Still. Bunny’s tiny.

    Eating Schedule Changes

    So big thing from the nutritionist, eat less often. Yep.

    Anytime bunny asks for food, we give it to her. Made sense to us, give her as much food as she can take. But apparently, that may not allow her to get hungry enough to eat enough calories. Eating small amounts all day is how adults loose weight, we have to switch that to help her gain.

    So instead of eating every hour to hour-and-a-half, we’re spacing out more like 2 hours. 3 snacks & 3 meals. Still a lot of eating.

    We’re also trying some new things like yogurt and fruit smoothies (with flaxseed oil whenever I get my act together and remember to buy it.) Plus adding whip cream or cream cheese to her fruit since she’ll eat tons of fruit & the fruit has fiber. (Also still supplementing with fiber.)

    All in all, we’re still just trying to up calories and keep her from filling up on water.

    The Scary Part – Tests

    So the GI’s main thing, more tests. Sweat test to rule out cystic fibrosis (we go tomorrow) and lower colonoscopy/upper endoscopy with biopsy to test for celiac (since blood work couldn’t tell us.)

    I’m a little freaked. The sweat test is the “easy” one. They literally collect her sweat, but they have to stimulate her arms to get it, which involves attaching something to her arms. I don’t quite get all the details, but not looking forward to it.

    Colonoscopy/endoscopy is supposedly quick, but they put her out. The idea of my little girl unconscious like that, scary. That’s why I’m getting the sweat test first.

    Language Explosion

    The cherry on top of all this. Developmentally she’s still ahead of the curve. She’s got crazy amount of words and using 2-3 word sentences sometimes. She can handle directions for 3 consecutive tasks. She’s mastering puzzles. And so much more. But the funniest part is definitely the language.

    So while other kids may outpace her in physical growth, she’s working hard at growing that little brain.