Five Years Better?

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Five years later.  My oldest son Sam was diagnosed with diabetes five years ago today.  I remember it vividly-that hazy, humid morning when Sam decided to impress his friends in the camp carpool by “playfully” checking his blood sugar in the car. The meter surprisingly read “400.” I kicked the four other boys from the car, and dealt with Sam’s condition as best I could: Phone calls to Adam and the endocrinologist, the trip down the Naomi Berrie Diabetes Center at Columbia.

Life, once again, interrupted by another medical diagnosis. Our family had just reached some degree of stability. Four year old Leo (who had been diabetic for almost three years) had a counselor to monitor his blood sugar at a day camp, Sam was returning to camp for the first day after a boating accident left him with 30 stitches above his eye. He was excited about his trip to the water park the following day.

We were about to put our house on the market- bigger home- one button push away that very morning. Contract with broker signed, photos taken, open house scheduled. Of course, health is paramount, this was canceled, indefinitely.

Five years older.No age is “good” to develop diabetes. The fluctuating blood sugars are not good for the human body. This we know.  When Leo was diagnosed with diabetes at 13 months, some people commented,  “Well, it’s better that he is young, he won’t know anything different” . Where did that leave Sam, a nine-year old already dealing with a diet restricted by celiac disease and multiple food allergies? He had already lived through almost three years of our meticulous carb-counting , blood testing and site-changing with his brother. He already hated diabetes.

Five years more exhausted. Diabetes is pervasive and all-encompassing. Other adjectives are relentless, unpredictable, inconvenient, and just plain hard. When it comes to multiple siblings in a family, one plus one is more than two. Although this shouldn’t happen, we sometimes forget who was bolused for breakfast, who checked most recently and was corrected, when was the last site change, etc…

I was already exhausted from the 24/7 care of a rambunctious little boy with brittle diabetes, and I could not imagine how I would manage two children. My energy was sapped, my mental faculties maximally challenged , my emotions drained. The well was dry. I dreaded the days and weeks ahead which I knew would involve:  more diligent monitoring, always anticipating, thinking like a pancreas. My friends and family, always supportive, offered encouragement “You can do it, you’ve already done it.”  “One foot in front of the other”. What else could they say?

But Still Standing…  Five years ago, there was no light at the end of the tunnel. But aging has its advantages. My children have become more independent and resourceful. Sam manages his own blood sugar and can change both his pump and monitor sites, except when he doesn’t.  Remember, he is a teenager. At sleepaway camp, he must do everything himself, while at home he prefers our assistance. Leo can both test himself and administer his own insulin. This is HUGE! At eight years old I can finally drop him off at play dates (although birthday parties are still tricky). It can be dangerous  because he now thinks he knows EVERYTHING. “Is there anything more I need to learn about my diabetes, Mom?”  He understands percentages and carb ratios more than most people understand multiplication, but too much insulin can cause scary low blood sugars, so he still needs adult supervision. The worry factor hasn’t changed. In fact perhaps it has increased, since they are beginning to make their own decisions.

As for me, aging stopped being fun a while ago, evident in my changing vision prescription, deepening crow’s feet and laugh lines, and more frequent trips to the hair salon. On the flip side, my children’s  growth has enabled me to go back to work, and spend more time with my husband and friends, as I begin to reclaim my life.

Five years later IS better, and diabetes research points to a more favorable future in next decade. In the meantime, I have three boys to get through adolescence. I brace myself for the odors, the mood swings, the heated arguments… But not before my power nap, followed by a large cup of coffee.  Definitely feeling five years older, but better as well.

Diabetes Diagnosis: How did you know?

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Today is the 5 year anniversary of Leo’s diabetes diagnosis. Most parents of diabetics remember that date in their lives as prominently , but certainly not as celebratory, as their birthdays. Upon hearing that Leo was so young, I was always asked, “Diabetes at 13 months? How did you even know?”

The truth is that Leo’s diagnosis caught us completely off guard. Since he was in diapers and was a voracious eater/drinker since birth, the telltale signs of diabetes such as frequent urination and increased thirst were not clear. Furthermore, my family members and close friends were more concerned about my health at the time. Complications of the emergent c-section I had with Leo left me with a debilitating painful neuropathy. It has improved over the past 5 years, but at the time, I was not hopeful it would ever improve. After trying many therapies with many doctors, we decided that a surgery to resect the problematic nerve was the best option. This controversial surgery was only performed by a special neurosurgeon in Georgetown and we planned the surgery for September 2007.

Ultimately, I canceled the surgery because of other symptoms that cropped up, and this turned out to be a lucky stroke of fate. Three days after the scheduled surgery (when I would have been recovering in a hospital in Washington DC) 13 month old Leo ended up in the Pediatric ICU in Diabetic Ketoacidosis. His only symptom had been an awful diaper rash and some increased fatigue.

October 1, 2007 was a busy Monday in my pediatric office  When I came home the babysitter told me that he had white spots in his mouth and was crying a lot. When I arrived home I saw white spots were oral thrush,which is  uncommon at this age. This combined with the diaper rash made me ask myself: why he would have yeast overgrowth in 2 different parts of his body? It was something you would see in immunocompromised patients, and there was nothing wrong with his immune system. But could it be diabetes? Come to think of it, maybe he was going through more diapers than usual, but then again, I had never seen a child diagnosed so young.

Leo 1 week after diagnosis

With that question in mind, I brought to him to an after-hours pediatric emergency center instead of my own hospital because I knew how busy the ER would be. Perhaps I think I was in denial of the fact that Leo probably needed tertairy care. One of my former residents, Andre, was the attending physician that night. When they drew Leo’s blood without him even flinching, we knew that something was wrong. Andre showed me the lab slip without speaking (this was difficult for him as well) and his blood sugar was 880-that’s near coma level. I let out a slow “NOOHHHHHH“ wail. I was alone there with Leo. My husband Adam was at home with our other children on a conference call. He didn’t know why I was in such a rush to seek medical care that evening. Adam is not a physician, so when I called him he didn’t understand. “I know diabetes isn’t good-my Nana had it. But why are you freaking OUT?” Being a doctor, I knew our lives would never ever be the same again. From that moment on, Leo’s life would completely depend on insulin and strict management of his blood sugars and food intake. Every parent has hopes and dreams for a long, fulfilling life for their child. I knew that I needed to work as I hard as I could for as long as I could to ensure he could live without complications of this awful disease.

As the medical staff arranged for hospital transfer, I fielded phone calls from my mother as she was crossing the Tappan Zee Bridge to help us, concerned friends who were trying to help out in any way, and my work colleague Vicki who was taking call for our pediatric practice that night. We all shared degrees of shock, worry, and sadness.

After the calls, I took a deep breath and tried to sit calmly with Leo in the small, brightly-colored, child-friendly exam room and watched a silly show that was on TV. I looked down at him, his enormous eyes, dark hair and cherubic face. He was a baby, helpless and completely dependent on us. He was not able to understand the show we were watching, let alone how this diagnosis would affect his life. As I held him, my tears fell silently onto our already drenched clothing. In order to flush away the ketones in Leo’s body and correct his metabolic condition, he needed a lot of IV fluids. This was causing him to urinate so much he was constantly leaking through his diapers, no matter how often we tried to change them. Who would have thought to bring a change of clothes?

My sadness quickly changed to anxiety when I began to think of how I would manage this new life. I was stretched so thin already. In addition to our other young children, my work and my awful c-section pain were sucking the life out of me. I already felt like I was running on fumes. Now this? How? And then I started feeling frustration and anger as I frantically resumed my attempts to reach my sister Jodi. I am blessed with wonderful parents and two sisters. We have always been there for each other. Always. Jodi lived close by. But where was she now? And why on earth was she not answering her phone? Of course, after someone managed to reach her, she came to the hospital that very night with a huge hug and several changes of clothes for both Leo and myself.

Dr. Andre returned to our room and spoke with us for a little while. I don’t remember what he said, but I do remember his kind and patient tone. I was grateful that during our many ward rounds and clinic sessions, I had spent some time addressing the importance of empathy and effective communication with families, especially when relaying a difficult diagnosis. During times like this, it made a huge difference. Then he was called back to the phone to sign out details to the attending in the ICU. I stood close to the door in order to eavesdrop. I just couldn’t help myself. “13 month old male new-onset diabetic in DKA..” I retreated back into the room. It was surreal, this role reversal, this whole experience.

And that, five years ago, was how it all started.

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.