Thanksgiving 2017

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Thanksgiving 2017 included many things for which I was grateful, but also an unwelcome reminder.

We always join our family at my parent’s home, on the small cul-de-sac in Suffern, New York where I grew up. There are 18 of us: my parents, my two sisters and me with our families,   including ten grandchildren. This year was especially significant since my dad was celebrating his 80th birthday, and also because my sister Alyse had just moved to Florida with her family, and we knew it would be a while before all 18 of us were together again.

We headed out to Suffern early afternoon with our dog Pepper and our gluten-free, dairy-free, nut-free, flax-free pumpkin pies. The boys had changed their insulin pump sites (catheter inserted and changed every 2-3 days) that morning specifically so that they would be fresh and working most effectively for the feast we would have later on.

On the way there I was thinking about a few other things. This Fall also marked our 10th anniversary of having diabetes in our family, which easily ranked third on our life-altering list after marriage and children. On Thanksgiving ten years ago, diabetes was our only focus. That weekend had also coincided with my 20 year high school reunion. I had missed my 10 year, and I was looking forward to seeing people I hadn’t seen in two decades. But also nervous. While I had been looking forward to sharing news about my “happily-married-doctor-with-children-life,” diabetes turned everything upside down. Parenting took on a whole new set of challenges.  I was filled with anguish and apprehension for how my son would grow, and how we would manage.

So when I turned around in the car and saw Leo’s cherubic face and mischevious expression as he tormented his teenage brothers, I smiled. In his 5th grade he was a superstar; fun-loving, smart, charming and kind.  Although his blood sugar fluctuated as much as ever, he was quite independent, giving us more freedom and confidence. In these 10 long years, we had come a long way.

We arrived in Suffern and enjoyed reuniting with my family. The kids alternated between playing in the yard and watching football inside. Until the alarm started beeping that Leo’s blood sugar was high He gave more insulin, but his body wasn’t responding. We hoped that perhaps it was higher because he had been sneaking some food. But within a short time, it was high-too high to actually register a number, despite all the extra insulin. Usually when this happened,  it meant he needed a site change, but we had just done this a few hours before. We should have had the insulin pen as a back-up, which I have them carry in camp or on vacation.  But we just didn’t have it with us that day.  Normally the life of the party, Leo lay on the couch, feeling miserable and nauseated. Dinner was just about to start.  We didn’t want to go back home, but we also didn’t want to end up in the emergency room. All I had with me were the syringes I had been using to give allergy shots to my other son, but they were different units of measurement, and so I reached the endocrinologist on call for instructions (a few units off could be a lethal dose), had my older son  Sam  draw it up from the insulin in  his own  pump, and gave it to Leo. It took hours to come down to a good level, during which we wrapped up his marshmallow-coated sweet potatoes and other special Thanksgiving treats for him to eat the following day.

This setback felt like a slap in the face, an unwelcome splash of freezing cold water. Initially I berated myself for not having brought the back-up pen or site change, but even with those, it would have taken a long time for his body to respond. It was just as unexpected as what happened at his friend’s sleepover party a month before, when his blood sugar kept dropping during the night, and I drove over at 3 am to stabilize him. These were the ugly reminders of the danger and unpredictability of diabetes.

But what have I learned over these ten years? The importance of bouncing back, and trying to heed my own advice about staying optimistic. When there is a reason to be happy, Be Happy. Period. ( It was hard to be happy that Thanksgiving night. But the following day, after returning from work early to get ready for my 30 year high school reunion, my kids were genuinely glad to see me and laugh with me about my anticipation. And once alone on the 45 minute drive to the reunion (we all decided to go without spouses), I reflected on the frustrating past 24 hours, and our collective ability to be resourceful, and to bounce back. And at the reunion, I kept my promise to myself to not speak about diabetes, or else address in the briefest way if people asked me about it. A decade later, it was not my only focus.

The Disney Dilemma

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We all have moments when we are faced with the trade-off of good parenting versus family convenience. I was recently reminded of this when a colleague of mine was dreading her upcoming family trip to Disneyworld. Despite her detailed plans for the most useful Fast-Pass packages and the closest Disney Property lodging, she knew it would not be easy for her husband and her 2 young, rambunctious sons. She told me about her scheme to increase her child’s ADHD medication and pack many bribery snacks  in order to avoid major melt-downs while waiting for the rides.P1030692

Now, I know I am not alone in saying that Disney can sometimes be less than magical, and more of a necessary evil.

This brought me back to our recent trip to Disney, when my parents took my sisters’ and our families to Orlando for their 50th Anniversary two years ago. It was a wonderful trip, but as always, food presented a big challenge for us.  It was even harder this time because it was during Passover. We packed plenty of gluten-free food, and tried our best to keep kosher for the 8-day holiday.

My sister Jodi and I knew that we couldn’t coordinate the entire day together in the Magic Kingdom, due to different ages of the 7 kids. But we planned to finish the day at ROLLING THUNDER, their favorite ride. We managed to meet up a bit later than planned because my 10 year old nephew went “missing“ for a terrifying 28  minutes after going to the bathroom in Adventureland.  As we preparing for 6 of to go on the ride, a furious argument erupted between Leo and Ben, my two younger children. I don’t remember what caused the argument: we were all hot and exhausted. P1030711It may have had something to do with an ice-pop, but I could be mistaken, I am sure Leo’s blood sugar was high, since we had been detaching his insulin pump for the wet rides, and he was irritable.   I just remember it was loud, embarrassing, and physical.  I said  “That’s it-you are NOT coming on this ride with us” He was fuming when I left him with my sister and baby niece.

We had planned to use our Diabetes Passes, which at that time worked like a fast pass that allowed one diabetic person to bring two other passengers with them. While this may seem unfair to others with chronic conditions who don’t get special treatment, our family viewed it as one of the only perks of having this disease. So we went to our line, showed photo passes, at which point the attendants asked where Leo was. Clearly, we couldn’t use the Diabetes pass without him, and Sam’s pass wasn’t enough to get all the cousins on the ride. OOPS. I sheepishly mumbled “Uhh. He’s over there….bad behavior” The attendants glanced at each other and said “We heard. Well, he needs to ride if you want to use the pass.”  Adam and I looked at each other, knowing what was at stake. This was the fun roller coaster finale, and we didn’t want to ruin it for everyone. In a moment of weakness,  we told Leo to join us. So much for setting limits and teachable moments…

Disneyworld is magical, fun, and friendly. It can also be frustrating and anxiety –producing. My best advice to my colleague: Have as much fun as possible, expect many stressful situations, and remember that even the worst moments, in time, will be funny as well.

I’ll let you know how that worked out for her…

MDMommy Goes to Reunion

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A few weeks ago, I went to my 25th college reunion. It was a hectic time of year, and there were so many reasons not to go: playoff/championship games for my sons, graduation prep, camp packing, and I was missing the Bat Mitzvah of the daughter of my dear college friend. But I had been looking forward to it for years, and I did not want to miss it. After a busy Friday morning at work, I drove to my friend’s house in Croton.  Prepared for the fickle weather in Ithaca, we both laughed at the huge quantity of clothing we brought for two days, and we were on our way.

The ride up was beautiful, and it gave me a dose of what I had been pining for: rolling green hills, endless blue sky, and long stretches with no buildings in sight. My heart skipped a beat as we drove towards downtown, passing the familiar street signs of our off-campus apartments.  It was a mixture of excitement, apprehension and curiosity about whom I would see, how I would feel when I saw them and vice-versa.

We had a great time. It was fun to see the people we both expected and did not expect to see, roam through Cornell’s gorgeous campus, buy clothes from the store to bring home for our kids, and eat, drink and laugh at our favorite places in Collegetown. Many of the alumni from our year did not bring family like they had done in the past, which allowed us to be more flexible and spontaneous.

For me, the most surprising part was the content of many conversations we had. I did not feel myself compelled to speak much about my family beyond a brief description, or even to show photos from my phone. I hadn’t seen many of these people in 25 years. Our conversations were often brief, because someone else would pop in from the side and we would start up another topic. During the past 25 years, we all had experienced successes and failures, we all faced challenges. Some of had spouses and children, but not everyone, and I did not want to probe. My readers know that I am 150% invested in my family, particularly the high-maintenance medical care of my children.   It was refreshing, for the first time in what seemed like forever, to answer questions about me. “Did you end up becoming a doctor? Where do you live now? How are your sisters? Remember that time when…”  It was me before MD, me before marriage, me before mommy, and notably, me before my childrens’ diabetes and other health issues. It was profoundly liberating.

This brief detachment from diabetes was therapeutic and unfamiliar. While our parents had watched our children for a weekend or two in order for my husband Adam and I to get away, we were constantly interrupted by the multiple phone calls about blood sugars and insulin dosing. The planning alone for these excursions was exhausting, and often created more stress. Leaving the children in Adam’s capable hands for 48 hours gave me the freedom I needed.

The MDmommy part of me has always known the importance of “Me” time, and I advise new mothers to leave their babies with a capable caregiver for brief periods when they can, to regain a sense of self. Diabetes is so tricky that the closest I have come to a real separation was my yoga class, when I notify the school nurse to contact Adam for emergencies.  For mothers, especially those with children who have chronic needs, do yourself a favor: take a break, longer than just a Girl’s Night Out, and don’t wait eight years from diagnosis/onset to do it…

Flax is a four letter word…

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That’s correct. Those tiny, nutritive brown specks found in so many foods trigger fear and danger both in and out of our home. My oldest son Sam is severely allergic to flax and has had a few anaphylactic reactions requiring the use of an epi-pen and, most recently, a very scary trip to the ER. A few weeks ago, I unintentionally “flaxed” my son. How did this happen? How did we even know he was allergic to flax?  Well, I am fairly certain he wasn’t born that way. He has been on a gluten-free (GF) diet for the past ten years, and flax/flaxseed is used to enrich many gluten-free products by adding fiber. It was hard to figure out, but a few years ago we noticed that after he ate certain foods, he developed writhing abdominal pain lasting 6-8 hours, often into the next day. The only common ingredient was the formerly innocent flaxseed.  Then, formal allergy testing showed he was severely allergic and would have to be very careful going forward. We knew that Sam had a milder allergy to tree nuts and some fruits (throat itchiness), but this was a whole new ball game.

Having a flax and tree nut allergy in a person who also has diabetes and celiac disease restricts food choices to about 20% of all GF foods. Shopping is often depressing, especially finding the ingredient in new products that you would otherwise want to try. FDA labeling laws have been enforced for products containing wheat and nuts, but finding the word flax can be like searching for a needle in a haystack. Nobody seems to care about it, and it can take a long time to get a definitive answer when eating anywhere in public, because only the chef knows the ingredients.

As a mother, I do what I have to do. But, what about Sam? It’s scary, annoying, and labor-intensive. He must question each food item and assume nothing is safe, because flax is increasingly being used in EVERYTHING. I stopped taking my children to GF fairs, which used to be better than Halloween for them: They enjoyed running from table to table, sampling delicious treats, including breads, pizza and dessert.  I didn’t even care about their blood sugars on those days.  We addressed that later. The last time I took them to one, Sam’s throat began to itch (probably from a tree nut) and he went to wash it down with some NAKED juice which, it turned out, unfortunately and ridiculously contained flax. This was followed by Benadryl and a trip home.

So, knowing all of this, how could I be so careless? He was on his way to soccer practice, and needed something to tide him over. I made him a sandwich with home-made bread I had been making for years, from Gluten-free Pantry flour mix.  My kids LOVED it. They affectionately called it “Mommy Bread”. Sam immediately reacted with throat itching and abdominal pain. I rummaged through the garbage for the flour package. With my hands shaking , I read it. There it was, the four letter word: FLAX. They changed the ingredients on what had become a cornerstone of my kids diet. We gave Benadryl, and the epi-pen. Sam’s symptoms started to subside. I initially brought him to my pediatric office, thinking I could monitor him there for a few hours, sparing him the drama of the Emergency Room. But, his abdominal pain recurred, and I drove him to the ER. This was terrifying. As he sat next to me in the front seat, his pain worsened to the point that he passed out. At that time, I was less than 10 minutes from the ER so  kept driving as I continually checked for his pulse, and yelled his name so he would mumble, or stir, which seemed to work.

When we arrived, he perked up, was given more Benadryl and Zantac, and stayed another 5 hours for observation. We were home in our beds before midnight.  Sam slept late the next morning, but made it in to school in time for math class.  He is a conscientious student, and he didn’t want to fall behind. For the next 48 hours, I was rocked by many emotions: Guilt, fear, exhaustion, and not the least of all, concern about the future. Having a delayed allergic reaction after an epi-pen administration is not so common, and it makes the future even more scary.

I have been told that I am a “super” mom. That my medically high-maintenance children are lucky to have me.  I have dealt with respiratory emergencies and life-threatening blood sugars; nothing is more unforgiving that an anaphylactic reaction. I gave him flax (Should I have read more carefully? Even though I had been using the same packaged flour for 10 years?). I drove to the ER instead of calling 911 because I wanted to bring him to the hospital of my choice, not necessarily the closest as mandated by EMS.  Was this a mistake? That car trip is seared in my memory as an experience that no parent should ever go through. In the end, all turned out well, and of course I am so grateful.

But what helps the most is the resiliency of my son Sam. We were able to joke in the ER about how I “poisoned” him by feeding him his favorite bread (which he can no longer have).  He insisted on going to school the next day where he told the necessary people about his reaction to some food he ate. No big deal he said. That, for me, is the biggest, best deal of all.

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.

Life’s Tough… get a helmet

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Several years ago, I bought this sign from a kitschy store in the small Pennsylvania town where my children attend sleepaway camp. It was half-way through my one week stint as a pediatrician, where I treat the injuries, illnesses, and psychosomatic pains of campers and staff. I laughed out loud when I read this sign, recognizing both the absurdity and appropriateness of the motto. As a general pediatrician for the past 17 years, I preach anticipatory guidance at most office visits.  As a mother, I do my very best to comply. Car seats, helmets, protection from sharp corners, outlets, and choking hazards.  A tragic case I saw in the ICU left me with a balloon phobia, so my children only had mylar balloons (no latex helium) until their fifth birthdays.

The sign rests in the most conspicuous part of my home, on my entry bureau as a daily reminder. What exactly does it mean? I both appreciate the sign and resent it. Chronic health conditions such as diabetes, the most difficult part of my children’s existence, could not have been prevented by a helmet, or full armor for that matter. Neither could they have been prevented by my meticulous pre-natal diet with food restrictions, followed by breast-feeding. A ski helmet did not protect my mother from a traumatic brain injury, which required surgery and prolonged rehabilitation. It clearly would not have helped Sam with his multiple injuries this past summer, for which he spent several weeks in a leg and arm cast. Most recently, a helmet did not protect little Leo from breaking his wrist while skiing last month.

Metaphorically, I love displaying the sign. The importance of developing a thick skin to deal with life’s challenges should not be lost on anyone, including myself. We prevent what we can, we hope for the best, we walk outside and face the many obstacles in our path. I have tried to teach my children that diabetes should not prevent them from doing or accomplishing anything. My 14 year old son just left for an eighth grade trip to Israel for two weeks. A year ago, even six months ago, we did not think this was possible. It was too complicated: diabetes, celiac disease, multiple food allergies, growth hormone deficiency and asthma. No helmet could protect from him the myriad complications which could occur from any of these while he was away.  Thanks to technology, we armed him with as many gadgets as possible: a continuous glucose monitor, an extra insulin pump, even a new incredible device called the Dexcom SHARE, which allows us to view his blood sugars  from our iPhone as he SLEEPS while he is half way around the world. Although it only works part of the time, it is an extra cushion to prevent the near disaster of what happened on his Washington DC trip in April (see: Not just a gadget).

More importantly, he is armed with the fortitude and problem-solving ability he has developed over the past few years. That’s his real helmet. Both he and we know that problems will arise. He is sharing this amazing experience in Israel among his closest friends, We hope he won’t let his frustration and discomfort (which we have read by text already) ruin his time. “It’s hard doing everything myself, being in charge of everything. I never get to relax.” This trip will empower him and help him realize he is able to accomplish all he sets out to do. That is what he and we want.

But dammit, he better tie his shoes on those long rugged hikes, and whenever necessary, he better wear an ACTUAL helmet…

Our Thanks

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With a sense of relief, I handed the box large box of cards to the woman at the post office. “Good for you, you got your holiday cards out early this year,” she remarked. I smiled warmly and thanked her. We used to send out holiday cards each year, dressing the kids in cute outfits, strategic poses and creative greetings for Happy Chanukah and a happy holiday season.

But instead of holiday greetings, these envelopes contained our THANK YOU photo cards from our annual  JDRF Walk to Cure Diabetes. In our seven years  of participating in the Walk, our family has raised over $175,000 to fund important diabetes research. We are proud and deeply grateful for all of the support, and we share this by sending out about 200 thank you cards each year.

Beyond the tangible dollar amount. The Walk represents so much for our family.  Every year, in late summer, we write a letter describing how strongly diabetes impacts our family. We share both the triumphs of our active, growing children along with tales of our daily hyper-vigilance which is necessary to keep them healthy. It’s true, perhaps we are wearing our hearts on our sleeves, but many people appreciate and learn from our letter because allows them to glimpse into our reality and share our positive hopes for the future.

Walk Day itself is inspiring. A few thousand walkers come to support our cause, but I focus on our team, The Battling Brothers. (We needed to change our name from Leo’s Lions after my older son Sam was also diagnosed). A group of 40 plus people join us, including family, friends, and classmates who drag themselves out of bed early on a chilly Sunday morning. I’m still trying to perfect the art of being a good hostess, trying to spend some time with each person, distribute t-shirts ,and make any necessary introductions. The hours fly by because I am surrounded by the people I love, and I know the larger crowd is an extension of this, of people who care so much for a cure. A few years ago, the Walk theme was “Who’s your number one” (person with T1D). Everyone at the Walk cares deeply about someone, and they share a common goal.

Now, don’t get me wrong. I did not always feel this way, and I am definitely not thankful for diabetes. But I am certainly grateful for the amazing people I have met along the way, a second family; people I can call at the drop of a hat for help to pick up my child safely  or help with needed supplies. Last weekend I was with Leo at a birthday party 40 minutes away from home, BG too high to register (over 600),  and somehow we ran out of test strips. As I started to panic, I remembered my close friend from JDRF had recently moved a few miles away. She saved the day by lending me a bottle of strips, and Leo was able to stay for his best friend’s party.

Our happiest day, of course, will be when Type 1 Diabetes is just a memory. Until then, we enjoy sending thank you cards and acknowledging the many generous people who support us and share our hopes for a cure. We still get to show off our family in the photo, and this year I even beat the December Holiday rush!

Happy Thanksgiving to all of you and your families.

Going the Distance

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This spring marked the 10th anniversary of the opening of the Maria Fareri Children’s Hospital. It’s a place which holds special importance to me as I have been there as a physician, a parent, and (since one of my children was born there), a patient. The hospital was built in memory of Maria Fareri, a 12 year old girl from Connecticut who succumbed to rabies, suspected from bats near her Greenwich home. Although she didn’t survive, her parents appreciated the exceptional care they received at the Westchester Medical Center, but also recognized the region’s need for a more family–centered hospital. In 2004, MFCH opened its doors, the “Disney of Hospitals” where patients are treated in child-friendly neighborhoods replete with fire-trucks, trains, and teen computer rooms. Visitors can enjoy a small baseball museum, doll collection and walk-through fish tank. It is a hospital with attractive amenities staffed by excellent clinicians: yet it is a hospital, and therefore a place that you never want to need.

Each spring, families and community members gather to walk in the “Go the Distance” fundraiser on the sprawling hospital campus. The many miracle children are there as well: from extreme-premature babies to children who have survived cancer or near-fatal accidents. When my kids were younger, I walked a few times with my double stroller.  I hadn’t returned for many years until this spring, when we joined a classmate of my older son whose accidental peanut aspiration landed him in the PICU for 7 precarious weeks.

For the years we did not walk, I felt a need to separate. Perhaps it was my hectic family life, my involvement in JDRF, or the intense familiarity of it all. Though I was incredibly grateful, so much of our family time is dedicated to medical care: 24/7 diabetes management, physician visits (at least 20 annual visits to sub-specialists…) it was the last place I wanted to be.

The first time a child of mine was hospitalized was when Leo was 4 months old. It was Christmas Day, I was on call, and he had been wheezing for several days. Despite home nebulizer treatments and steroids, he deteriorated overnight, and so I brought him with me to the hospital, had him stabilized in the ER, and went to round on my patients after Adam made arrangements for my other children and arrived to relieve me. Although it was distressing, I thought it was too early in the morning to call for help from my colleagues, and I knew he would be OK once given oxygen. I was asthmatic as a child, and I had treated hundreds of babies with respiratory viruses.  Of course, it feels different when it is your own child. I found myself  asking the pulmonologist questions like “how bad is it to have less oxygen going to the brain, even if it’s only for a short time?”, knowing full well he would be fine. I suppose it was sheer adrenaline that got me through those 24 hours until my colleagues took over. It was also helpful to have good coffee and muffins from Au Bon Pain in the hospital lobby, as well as the cooperative residents who came to my son’s room to run through the patient list and update me. What wasn’t helpful? The comment of a community physician when I called to update him on his patient and mentioned my son’s admission, he replied “well, now you know what it feels like from the other side” Really??  I was angry and hurt but in time, I knew that he meant well.

The next hospitalization was when Leo was diagnosed with diabetes and went straight to the PICU (see Diabetes Diagnosis ). It was completely unexpected and life changing. It was the first time I heard this phrase: Type 1 Diabetes is no longer a death sentence, but it is a life sentence. We spent the next week stabilizing his blood sugars, learning diabetes management, and adjusting to a new normal. There was a line out the door from visitors and hospital staff including clerks, nurses, and physicians. These were people who had worked with me for a decade.  They brought enough balloons, toys and stuffed animals for a classroom of kids. We felt loved and cared for, but I knew that my relationship with the hospital had changed forever.

Twenty months later, Ben (my middle son) was hospitalized for the dreaded swine flu. What began as cough and fever quickly developed into respiratory distress before our eyes. It was terrifying. We will never forget our panic as we watched his 6 year old body struggle to breathe like a fish out of water. Grateful to be in the hands of the PICU staff, we were relieved when he was put on a ventilator, and even more relieved when he could breathe on his own. It all happened so quickly, at baseline he was my healthiest child, and he improved over the course of a few days. My husband claims he still hasn’t recovered from this hospitalization. I still shut my eyes, shake my head and shudder when I recall that image of him struggling to breathe.  It was traumatic for both of us, and yet once he turned the corner, I was confident he would be fine.

The last hospitalization of my children was for Leo when he was 3 years old. He had a simple gastroenteritis which exacerbated his diabetic condition, and it took a few days to stabilize him in the hospital. We were relatively relaxed this time, there were no surprises, and Leo charmed the house staff by showing his independence while testing his own blood sugar and discussing the upcoming Superbowl.

Although it was a rather routine admission, I left the hospital more melancholy than ever. I thought back to the countless children with gastroenteritis whom I had treated and discharged, most of whom would never be admitted again. For hospital physicians, the pressure of discharge planning begins as soon as the physician examines the patient in the emergency room. In pediatrics, the patients and families are happy that they are healthy enough to leave, anxious to put this experience behind them. We certainly felt this way after Ben had the swine flu. A boy the same age in a neighboring town did not survive the same illness, and once again, we counted our blessings. We watched Leo grow from his initial admission, bigger and stronger before our eyes, and yet at certain times he was so fragile. I couldn’t keep him in a bubble, and yet a simple childhood illness landed him in hospital for nearly a week. Having two children with diabetes and other health issues, I knew our family was more likely than others to spend time in the hospital.

Aside from emergency room visits, we have avoided hospital admissions for the past four years, and we hope to continue this trend. As we walked in “Go the Distance”, I felt grateful for a few things: It was fulfilling to support the hospital and moreover, I was happy to join my former colleagues and update them on my family since our last “visit”. Now we were also healthy and walking. Most importantly, I was able deflect the focus away from our own pervasive medical issues and genuinely celebrate with the “miracle children” who were the Walk marshals. It reminded me of why I became a pediatrician long before I was ready to start a family: I was passionate about caring for children. It is relatively easy to admire their spirit and resilience. Working with these young patients and their families—especially the sickest and most fragile—helped me in an important way. They helped prepare and encourage me to get through my own family’s medical challenges. It is to them and the lessons they taught me that I truly express my gratitude.

Not Just a Gadget

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Last month the New York Times (NYT) published a controversial front page article describing  the exorbitant cost of care for Type 1 Diabetes. More specifically, it addressed the high price tag for technological  advances of glucose monitors and insulin pumps  Thousands of readers across the country were outraged and insulted, claiming that the article trivialized the development of these life-saving devices Since two of my three children are completely dependent on their meters and monitors, I was both shaken and surprised  when I read it.  I felt numb, then nauseous, and then grateful that I had a full Sunday of my sons’ activities to distract me.

Four days prior to this publication, one of these “gadgets” may have saved my son’s life while he was on a school trip to Washington D.C. It was Sam’s first time away from home other than sleepaway camp where , as camp doctor the first week each summer, I train the counselors to wake him during the night or the occasional a friend’s sleep-over, where I either call his phone or the parent wakes him to check. This school trip was a new experience.  Two weeks beforehand,  he started using the Dexcom CGM, a small device which continuously displays his blood sugar at any given moment . It is not perfect. It requires a separate needle and insertion site and calibration with the fingersticks several times a day, but it is very helpful in warning the direction of dangerous highs and lows.

The first day and night of his trip were non-eventful, and I barely heard from him. But the second night Sam called me at 2:30am to tell me that his CGM vibrated and woke him because he was running low, and he confirmed by fingerstick that his BG was 30. He took some emergency gel, went back to sleep , then woke up and called to tell me it came up to safe level of 150. I was 300 miles away,  and my heart nearly jumped out of my chest. I told him he did a great job, he did the right thing, and I would call him each hour. I called his actual room, because he no longer woke up to his cell phone. I called each hour, annoying the front desk clerk each time to transfer the call because Sam never answered on the first five rings. At one point she sighed “Mam, it’s 4:30 in the morning, I’ll transfer the call, but they are all sleeping.”  I called the school chaperone’s cell phone as well, just once that night, to make him aware of the situation. Sam was fine the rest of the night. And then, finally,  it was morning, breakfast time. Sam sounded tired, but ready for the return trip and stop-over in Philadelphia.

A BG (blood glucose) of 30 during sleep can be terrifying. While awake, a person with a BG of 30 may be ok, or may seize, or become unconscious.  If they are asleep, there is a chance they may never wake up. Hypoglycemic events are the most common cause of mortality in today’s  young Type 1 diabetic population.  It is the reason why parents wake their children during the night to check them. It is the reason why, when their child is out of their sight, the parent of a diabetic child may never truly relax. Sam had never been so low overnight. Why? Could it have been the travel, the sudden warm weather, different activity? We can’t know for sure.

As diligent as we are about managing diabetes, there is only so much we can do proactively. When emergencies happen, we need to be notified and react immediately. Sam’s CGM alerted him he was low, he somehow did exactly what he should have done, although I told him next time he needs to wake up one of his friends. He must know to make someone else aware of his situation. The whole experience shook me to my core. Most importantly, I was proud of him, and beyond grateful that he was ok.  And yet I couldn’t (and still can’t) ignore my fears of the future, future trips, weekends away, and even the not-so-distant reality of college.

The technology of diabetes care has advanced and enabled us to do more, and feel more secure than we have before. Reading the NYT article was an unwelcome splash of cold water in my face. Many people were angry. I was angry, but more surprised and concerned that people did not acknowledge the importance of these life-saving devices. Anger seemed like a waste of energy. The article mentioned that before the widespread availability of insulin in the 1920’s, Type 1 Diabetics would rarely survive more than a year. This harsh reality, combined with the development of the insulin pump and glucose sensors, makes me appreciate these advances even more. The JDRF voiced their outrage at the article, and started a hashtag movement #notjustagadget. The NYT did respond thereafter by publishing how the advances in diabetes care have dramatically reduced complications in developed countries, and how it remains a global epidemic. These articles seemed to validate the diabetes does warrant a large expenditure to prevent severe complications and death throughout the world.

As for the “gadgets” themselves, for me, the strongest emotion I recall in regard to their importance is how I felt while waiting for Sam to come off the bus. I waited patiently for him to collect his bags before enclosing him in the strongest hug I could manage.  I was grateful that we were giving his friend a ride so I could hear their laughter and eavesdrop on their comments, complaints, and recaps of the trip. It diluted the intensity of how I felt to have him home safely, gadgets and all.


Who Rescued Who?

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This is my favorite bumper sticker. I am not an animal rights activist. I have never been to an animal shelter. I am allergic to most domesticated animals with the exception of a few dog breeds. Still, I would not hesitate for a moment to discuss the merits of owning a pet. As a child, I begged my parents for years to get me a dog, and they brought one home for my tenth birthday.  As it turns out, she was a relatively unfriendly schnauzer who we couldn’t keep after she bit and drew blood from a few family members. From that point on, I needed to be satisfied with loving dogs from afar.

About a month after my older son was diagnosed with diabetes at age 9, my husband Adam suggested we get a dog. He had recently been taking the kids to the pet store to play with the puppies and saw how much they enjoyed it. My son was depressed about his diabetes diagnosis. He knew how diabetes impacted our family when his younger brother was diagnosed a few years previously. He HATED the fact that he too would have to deal with wide blood sugar swings, test his BG 12-15x daily, balance insulin dosages, and carefully monitor his already restricted GF and tree –nut free diet. A dog would bring love and distraction into our lives.

At first, I objected outright. Let’s face it; I was also depressed and angry about his diagnosis. Knowing how to manage diabetes in one child doesn’t make it any easier to have two. In fact, the responsibility increases exponentially: more details to remember, more emotions and worry, and more equipment to carry. Why on earth would we want to add a dog?

Adam acted strategically.  He brought me to the puppy store, where the woman brought out a beautiful chocolate brown whoodle (wheaten terrier and poodle, both hypoallergenic). My friend also had a whoodle, and we had spent a lot of time at their house. My son had slept over a few times and so we knew he wasn’t allergic.  As soon as I held the dark furry bundle in my arms, my face broke into an ear-splitting grin, perhaps my first genuine smile in a month. My entire body relaxed. Adam took photos of me with his phone and showed them to me daily to remind me of how happy I was while holding her. We brought Pepper home a few weeks later. Sam had expressed how a dog would make him happy, Leo begged endlessly and the timing coincided with his 3rd birthday. Ben was an animal lover so there no question how he felt.

Just to clarify, I realize we didn’t “rescue” her from the pet store, though I don’t know what happens to pet store dogs that remain unsold for 4 months. The timing was important, and we needed to know the specifics about the breed of dog we were getting. This information is not always available with a dog rescue. I knew that it would be hard, and any dog owner could appreciate this. More responsibility: feeding, walking, training, cleaning. With the exception of one or two friends, everyone thought we were CRAZY, shaking their heads in disbelief when they heard.  They were concerned that we were overwhelmed (which we were) and they were trying to protect us. Our pulmonologist (whom I have known for 25 years) was surprised that “someone who takes such meticulous medical care of her family” made this impulsive decision without consulting him. In truth, I was afraid he would discourage us, and I didn’t want any more disappointment.

Why now? A friend whose dog had recently died supported our decision, “Yes, it will be hard. But a dog can bring love and happiness into a home like nothing else can.” Over the past several years, our family had been through a lot. Although we could monitor the medical conditions (diabetes, celiac, growth hormone deficiency, food allergies), we certainly didn’t expect or welcome them.  Bringing Pepper into our home was a decision we could make. It felt good to make this choice.

We celebrate Pepper’s 4th birthday this week. There is no question as to “Who Rescued Who”. Each of us loves and is loved by Pepper in our own way. She is the first one to greet me when I enter the house and tilts her head sadly when I leave, her soulful brown eyes begging me to return soon. The boys argue over whose bed she will sleep in each night. She is a perfect combination of a coach potato when we want to relax inside, and she runs and jumps with the boys to share their excitement when they play.  Happy Birthday Pepper and thank you for the love, warmth and spirit you have brought into our home.  You were one of the best decisions we have made.   We know how lucky we are to have you.