Tag Archives: celiac disease

Oct 18 2012

That Crazy Dog…and other funny sound bites from Diabetes

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That Crazy Dog…

Two weeks after Leo’s diabetes diagnosis, we attended the annual  Celiac  Awareness Walk . I didn’t really want to go. But, I knew my older two kids would love to run through the gluten-free vendor fair and stuff their faces with the delicious food samples. Sort of like squirrels hoarding nuts for the winter. It was a highlight of their year, and it was irreplaceable.

So we dragged our tired bodies, Leo in the stroller, packed the test kit, insulin injections, etc. Shortly after we arrived, he became super cranky and his blood sugar was over 400! We gave him insulin and water and waited for the numbers to come down to a safer level, which takes over an hour. I took him outside because he was crying inconsolably and there wasn’t anything inside for him to eat. In fact, it was painful  just to watch everyone eat all the high carbohydrate food.  I stayed outside and tried my best to distract him. I also needed a distraction. It happened to be Ben’s 5th birthday, and here I was at a Ceilac walk (another reminder of this difficult lifelong food restriction) with my screaming, newly diagnosed diabetic baby.

When his blood sugar came down to 300 (still high, but not as dangerous), I pulled out a low carb yogurt from my bag and started to feed him. Out of nowhere, a friendly-looking dog came running up to the stroller, knocked the yogurt out of our hands and started eating it. The couple who owned the dog  felt horrible! They apologized profusely and started to offer food, none of which he could eat. They were so excited when they found raisins- a healthy food! Surely your son could eat these raisins. No way! I wanted to cry, raisins are way too high in carbs! I wish he would have been happy with string cheese, peanut butter, but no, not him, not a chance.

The rest of my family saw this episode from a distance, thankfully, and thought it was hysterical.  Adam wished he had recorded it! We hightailed it to the car and went straight home. I don’t remember the rest of the day but I was glad to hear Adam retell it, because I definitely needed a laugh!

I’m  hungry, but…

Leo figured out by age 2 that we preferred him to eat healthy snacks rather than anything else. If his blood sugar was high and I went to the fridge to get carb-free cheese or turkey, he would sob and yell “I’m  hungry, but not for fridge food, I’m hungry for cabinet food!”  No healthy food for him, he wanted the good stuff, the carb-laden stuff, and he knew where to find it!

The hidden joy of being low…

When Sam was diagnosed with diabetes he already knew the drill from his brother’s experience. So if he was low, we would offer a nutritious apple to help bring his bg back up. He would protest that he only wanted otherwise forbidden sweets to bring him up. “I’m not wasting a low! Grapes and apples aren’t candy. Where are the glucose tabs or sweet tarts?”

Hansel and Gretel

I’m sorry, they’re EVERYWHERE. The small test trips which only need a tiny drop of blood to test sugar levels somehow make it in to the proper receptacle only 60% of the time. It’s tough, they are kids, they test themselves up to 15 times a day. They (and we, I confess) mean to throw them out but somehow those darn strips somehow fall out of the bag. It leaves a trail of our travels like Hansel and Gretel.

My sister Jodi chides me all the time “We always know when you’ve been here, we saw your evidence by the pool yesterday  and on the way to the baseball field last week.” Because she’s my sister, and closer to me than almost anyone else on the planet (and post-dates expectant with her 4th  child, I might add) she can give me hard time. But I do apologize about the trail of strips.

Black market

 I attended a wedding of a college friend two years ago, before Leo started school and before Sam was diagnosed. I met an old friend there who mentioned that he had become an assistant principal of a charter School in Manhattan. Of course I asked him if there were any diabetic children in his school and how they were managing their diabetes. A sly smile came across his face as he explained “Oh, we have a kindergartener with diabetes who seems to be managing just fine. But he recently got in trouble for running a Black Market on the playground. He was actually selling his glucose tabs! When we asked him why he was doing it, he replied shamelessly…they taste good, and people want them.”

Okay, maybe these don’t produce the ha-ha belly laughs that send you rolling on the floor. But they add a needed dimension to our lives, making the best of our daily stresses. I suppose I have to thank my mom who encouraged me to go  that Celiac Walk 5 years ago. “This is your life now. If it would be good for your family to learn things, try things, then maybe you should just go.”  Really, I wanted to hibernate in my room until the next blood sugar check. But then …we wouldn’t have had that great  “ The Dog Ate My Yogurt” story…

May 21 2012

Top 6 Most Unhelpful Things to Hear After…

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I recently stumbled upon this list I wrote 6 years ago:

The top 6 most unhelpful things to hear after your child is diagnosed with celiac disease.

Wow, was I angry! I did not record the exact date on which I wrote this list, but I know it was around 3am and within weeks of my sons’ diagnoses of celiac disease (3 and 5 years old at the time).

We’ve all been there. It’s the middle of the night, and we lie in bed stewing about our current crisis. There are no distractions. We are free to analyze the painful remarks and fantasize about the missed opportunities for great comebacks.  I myself was angry, worried, frustrated, and pregnant.

6.  Well, it’s really just a diet.         Just a diet?  It is a life-long food restriction with potential medical consequences.  

5.  It’s  good that you’re also kosher so you already know about food restrictions.        Huh?

4.  It could be worse.      Ok, I am a pediatrician. I have treated children with devastating disease and traumatic injuries. Do they think I don’t know it could be worse?

3.  It’s  good that at least they both have it.       Really? How is that good?  Maybe  it’s easier to get dinner on the table, but what’s good about having 2 kids with a chronic health condition?

2.  Wow, that’s so interesting!         Remarks from a colleague. Interesting?? It sucks.

1.  Well maybe this will make you more empathetic as a pediatrician.     What?!! I don’t claim to be perfect, but I know that as far as empathy goes, I rank pretty high.  And besides, we’re talking about my own children. How does this help them? If I were an oncologist, would it be easier if my child was diagnosed with cancer?

Over the past 6 years the medical issues of my family have increased in both numbers and acuity.  I have learned to accept these awkward remarks with grace. I believe that people want to say something, anything, that can ease a painful situation. So, I have learned to look upon comments like this as unhelpful rather than stupid or demeaning. Depending on the setting and my mood, I usually take a deep breath and nod or smile faintly. But I’m glad I found this list that I wrote years ago. Looking back, I see that these were well-intentioned comments made by people who wanted to make me feel better, regardless of how strange or irrelevant they sounded at the time. I am so very grateful to have these people in my life (well, most of them anyhow 🙂 ), and I get what they were trying to do.

With the exception of #1, the empathy comment, that is. Clearly that one touched a nerve…

May 8 2012

Looking for trouble…

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“Stop being so clinical.” I hear that a lot, from my husband nonetheless. Of course, since he is not a physician himself, he appreciates it more when I call in eye drops for our kid’s conjunctivitis (on vacation in North Carolina) or save him from hours in an ER waiting room for something I can treat. Even before my own kids were diagnosed with celiac disease or diabetes, people would ask me, “Are you more paranoid about your own children’s health?” For the most part, I think that I am pretty relaxed. However, I do worry about things that non-pediatrician moms wouldn’t even know about.

“Why look for trouble?” That’s another line I hear often. Intellectual curiosity is central to the practice of medicine. “Medical Student Syndrome” refers to the hypochondria that occurs when 2nd year medical students study pathology and begin to worry that any symptoms they are having are part of some esoteric disease, like those seen on an episode of House. Once, when I returned from spring break with a stomach illness caused by a parasite, the student health clinic worked me up for an immunodeficiency that could be related to it! Of course, there wasn’t one. But, you get my point.

As a physician, hearing a potential diagnosis about a loved one can send your mind to dark places where it loses objectivity. You quickly work out a differential diagnosis, you try to stay positive, but you won’t stop worrying about the worst case scenario.

So, how does this curiosity translate to parenthood? We still laugh about the time I called my favorite pediatric ophthalmologist because my son was not tracking my finger or smiling enough for a 9 week old. The doctor reassured me that this did not mean he was blind. My middle son, Ben, cried so much from colic and reflux that we had him sleep in a car seat in his crib for the first 5 months of his life! His legs were so stiff from his constant crying that I brought him to a neurologist to evaluate his tone and reassure me that this would improve over time. I needed to hear that it wasn’t a neurological problem!

A few months before my oldest son Sam’s 5 year annual checkup, I noticed his belly protruded more after meals; he was small and he sometimes complained about belly pain. At a recent conference I had learned that celiac disease can manifest in many different ways. I never really thought Sam had it. I just felt compelled to make sure he didn’t. I needed to get the bug out of my head. We waited until his checkup and then asked his doctor to send the lab work for celiac titers along with the routine tests. He agreed begrudgingly after joking “only because you are a pediatrician-I really doubt he has it but I’ll send it.” Sam’s celiac markers were off the chart and a small intestinal biopsy confirmed that he did indeed have celiac disease. Further testing showed that Ben had it as well.

Celiac disease is an autoimmune disorder characterized by gluten intolerance (reaction to wheat, barley, and rye). The impaired absorption leads to a wide range of symptoms and the development of other diseases. A gluten-free diet prevents these but it requires strict, lifelong adherence.

Sure enough, this diagnosis sent me into a tailspin. What began as an academic question was now staring me in the face! Waves of panic washed over me. Although I wasn’t hysterical, I struggled to wrap my brain around our new reality. I was 6 months pregnant at the time. Six years ago, the available gluten-free (GF) foods were unpalatable and exorbitantly expensive. I was working full time and I hadn’t scheduled in the new food shopping, cooking, and baking from scratch. And who wants to learn that your 2 kids have a medical condition when you are pregnant with your third? This was an unwelcome surprise.

How does a doctor react to a new diagnosis involving her own child? For me, the hardest part was the chronicity. Kids are resilient, that is our mantra. Childhood illnesses and traumas are scary but usually transient. The celiac diagnosis was life-long, and therefore, life-altering. This meant strict compliance of a GF lifestyle in order to prevent a host of medical problems. It was a tough one to swallow. It was the end of spontaneity. Back to the diaper bag. Welcome to birthday party HELL.

The clinical part of me faded quickly. The celiac question had been asked and, unfortunately, answered. What remained was the familiar maternal challenge of keeping my children happy and healthy to the best of my abilities. It was parenting, and it just got a little tougher.