Month: May 2010

  • Cystic Diagnosis Part 3: Family Doctor & Celiac Clinic

    McMaster Children’s Hospital

    Picking up where we left off, Julie visited our family doctor the following Monday (Aug 25). The doctor reiterated #s 1 to 3 that we were told at the emergency room the Friday prior:

    1. It’s random. It won’t happen again. Don’t worry about it.
    2. Celiac disease – dietary disorder where the body can’t digest wheat properly.
    3. Cystic Fibrosis – but… the odds are quite low on this, so don’t worry about it.

    And, the doctor also repeated her earlier statement that it likely wasn’t CF, because Katie didn’t have any of the other symptoms.

    So… our family doctor booked us to visit the Celiac clinic at McMaster Hospital. We went to the Celiac clinic on Thurs September 11 2008. The clinic took some notes. They examined Katie. They took some blood. And they also spent a fair amount of time looking at her body – looking back, we can now see that they were considering whether she had “failure to thrive”.

    Funny enough, at that time, she had started to look a bit small. It wasn’t a huge deal, but we were starting to notice her slipping a bit in how skinny she looked. This was strange, as she was a pretty chubby baby. We look back at baby pictures and she was always a pretty good weight. But, around the time we started to have her tested for Celiac and CF, she started to look thinner.

    Celiac results came back a week or so later – I don’t have the exact date for that handy. Negative. She did not have Celiac disease. We were down to two options at that point: The prolapsed rectum was a random thing, or, we were looking at Cystic Fibrosis.

    Next step: test for CF. The Celiac clinic booked that appointment for us for Thurs Sept 25.

    Next post: Sweat test at the CF clinic

  • Cystic Diagnosis Part 2: Warning Signs

    Katie’s symptoms were subtle at first. She had colds that took a long time to shake. She had a hard time sleeping at night when she was sick with colds. Looking back, before her diagnosis, she had a LOT of sleepless nights. She was diagnosed at 17 months of age, and up until that point, Julie and I both wondered when she’d start sleeping through the night on her own. We felt that it was taking forever for her to do that.
    But, that in itself wasn’t a big deal. We repeatedly asked our doctor (who had been a pediatrician prior to going into family medicine) if she thought Katie’s constant colds were cause for concern. Our doctor said no, because most kids will get up to 10 colds a year. It didn’t seem unusual. Looking back, we didn’t have any cause for concern as Katie wasn’t exhibiting any of the other symptoms when she was younger (under a year old)… symptoms like failure to thrive, constant appetite, underweight, etc. So, we didn’t worry about it much.
    As well, she has always had a bit of a big belly. Nothing too major, but her belly has always been pretty big compared to the rest of her body.But, that’s not really a big deal and she’ll likely grow out of it.
    The one other symptom that we had always noticed, but didn’t pay much attention to was her poop. It was always really smelly and some of her food seemed to come out pretty undigested. But again, looking back, we didn’t clue in to this until after the diagnosis.
    Then, on Friday August 22, I was changing Katie’s diaper and she had some kind of a brown walnut shaped thing coming out of her bum. I called Julie into the room. She didn’t know what it was either. So, we bundled her up and Julie took her to emergency.
    Note: Katie wasn’t uncomfortable. It didn’t seem to hurt her.
    Julie FINALLY saw the ER doctor after waiting in the ER for about 4 hours. By that time, the walnut sized thing had disappeared. The doctor told Julie that it sounded like a prolapsed rectum. The doctor said it shouldn’t be a cause for concern, but to go see our family doctor the next week to investigate further. The doctor said prolapsed rectums are typically caused by one of three things:
    1. It’s random. It won’t happen again. Don’t worry about it.
    2. Celiac disease – dietary disorder where the body can’t digest wheat properly.
    3. Cystic Fibrosis – but… the odds are quite low on this, so don’t worry about it.

    So… we waited through a long and agonizing weekend before booking a visit with our family doctor the following week.

    Next up: family doctor & celiac clinic

  • Cystic Diagnosis Part 1: Intro

    My daughter Katie was diagnosed with Cystic Fibrosis on Tuesday September 30 2008. Life changed for our family that day.

    This post series is a documentary of our family’s experiences in the time leading up to that diagnosis. Writing these posts have been a cleansing experience for me. Putting my thoughts into words is helping me to process our predicament. And it is also helping me to focus on next steps.

    My goals for writing these posts are two-fold:
    • First, I hope to offer encouragement to other families that are faced with difficult health issues. Whether the struggles are Cystic Fibrosis or something else, there is a common understanding when we face our mortality and that of our loved ones. We share the same hopes, fears, dreams and disappointments.
    • Second, I hope to raise awareness for Cystic Fibrosis. Much has been accomplished, but there is still much to be achieved. I feel that we’ve measured how deep and wide the Grand Canyon is, and now in order to reach the other side we need to either build a bridge or fill it in. Uncovering the genetic source of the disease and enhanced treatment options to slow the progress of the disease have significantly improved the lives of CF patients. But the end goal remains elusive.


    I’ve been told that we’re fortunate. “At least she’s doing okay.” “It could be worse.” And my personal favourite, “She doesn’t look sick. Maybe she’s got a less severe kind of CF”. Most days, I tend to agree. Katie is doing well. She’s a little spitfire. She’s stubborn, tenacious and above all, she’s healthy. For now. But the truth is, she is sick. She needs her daily treatments. Without them, her health will degrade in a hurry. And, unless a cure is found, she will likely die from this disease at a younger age than any of us would like. And for the record, no, there is no “less severe kind of CF”.

    But… for now, it’s not as dire as it sounds. Things COULD be worse. And she IS doing okay. But the question remains: for how long? We live every day in denial. Maybe CF won’t catch up with Katie. Maybe she will be one of the lucky ones that lives a full life, growing into adulthood, getting married, having kids, having grandchildren. Hopefully.

    In the meantime, we live each day to the fullest. We enjoy our time together as a family. We learn as much as we can about CF. We pray for a cure sooner rather than later. We fundraise and raise awareness in the hopes that it will make a difference. We do her treatments religiously. And we thank God for the time that we can spend together as a family.

    Follow us for the next few days as we share our personal story of learning and accepting Katie’s CF diagnosis.

    Here is my post schedule for this series:
    1. Intro (this post)
    2. warning signs
    3. family doctor & celiac clinic
    4. Sweat test at the CF clinic
    5. Diagnosis
    6. My nightmare the night after the diagnosis
    7. First clinic visit at McMaster
    I’ll try to provide a new post in this series every weekday until it’s complete. Be sure to check back daily.
    Talk soon,
    Todd

  • May is Cystic Fibrosis Awareness Month

    Folks,

    Just wanted to remind you that May is Cystic Fibrosis Awareness Month. Please do your best to help raise awareness to help fight CF. I’m personally raising awareness by blogging, fundraising and participating in the Great Strides walk on Sunday May 30 2010 at Safari Niagara in Stevensville Ontario.

    What are you doing to help raise awareness and to help fight CF? Drop your comments below. And, send others to this site as well.

    I haven’t posted much over the last month. That’s gonna change for May. I’m putting the finishing touches on a series of posts, entitled, “Cystic Diagnosis”. In this series, I’ll be sharing our personal diagnosis story. When we found out that Katie had CF. The process that took place to verify things. How we responded. etc.

    And, I’m also going to fit in a post series on bioethics. As many of you are aware, we’re expecting our third child. Our daughter has CF. That means that Julie and I are both carriers. That means that Dow baby #3 has a 1 in 4 chance of having CF. Plenty of thought went into the decision to have a third child. We’ll share a bit of our thinking on that one. And, Dow Baby #3 is due this month (due date = May 27 2010). So… this bioethics series will be especially timely.

    Thanks and stay tuned!

    Todd