Another Painful Anniversary

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“If another child of mine were to develop diabetes, I will no longer be a nice person.” I said this many times in the months and years after Leo was diagnosed with Type 1 shortly after his first birthday. I suppose this was part fear and part warning. This weekend marks the 3rd anniversary of my 12 year old son’s diabetes diagnosis.

It was an uncomfortably hot and humid day in early July, not unlike how it feels today. I was driving a carpool of six boys to camp. Since I was running late, I asked Sam to help me out by checking Leo’s blood sugar. After impressing his friends by checking him, he announced he was going to check himself. I told him not to do this. It was annoying and unnecessary, and it wasted more test strips which would ultimately end up on the seats of my already messy car. He checked anyway and said, “Mom, I’m 400.” Just like that. I felt my stomach sink, and somehow managed to calmly say “wash off your hands with your water bottle, maybe it’s the sunscreen. No such luck. “Ok mom, it’s 390, I’m coming down.”

It was so far from “okay”, this BG was quadruple that of a healthy nine year old boy. Sam had not been having a great summer. He had started nightly shots for Growth Hormone (GH) deficiency nine days before this. Three days later he had a head injury on a boat (the camp’s first emergency on opening day) and ended up with 30 stitches above his eyebrow. Who knows if either of these things triggered the diabetes?  I didn’t have time to think.  At the moment, I needed to remain calm during the last five minutes of the slow,bumpy road  into the camp parking lot. I drop-kicked the kids from the car and brought Sam and Leo with me to the water cooler outside of the main building. I washed off my hands, checked my own BG, hoping it was a problem with the meter. No, my BG was perfectly in range.

I called my husband Adam, who, just like me, was hoping it was a temporary side effect of the GH. The endocrinologist, sensing the panic in my voice, advised me to check his urine for ketones before deciding the next step. We went home, checked for ketones (he had none) and that’s when she told me what I feared. With numbers that high, it had to be Type 1, not just insulin resistance from the GH. Speaking to her from my bedroom, Adam remembers me slapping and digging my nails into my thighs until they were red and raw. It was the only way I could unleash my anger. Adam told Sam we needed to go, at which point he cried “I don’t want to have diabetes.” I hugged him, held back my tears , and I put  some  numbing EMLA cream to his arms for the impending blood draws.

Routine provides comfort. The car practically drove itself to the diabetes center at Columbia. The parking lot attendants knew us well and welcomed us, and we made a beeline for the registration table on the second floor. The whole staff greeted us, and we were grateful for the hospitality and familiarity. That was the only positive feeling we experienced all day. When Leo was diagnosed almost 3 years prior, I was shocked and overwhelmed. Now I was only seething with anger. When the diabetes nurse educator said “well, there are worse things” I shot her a look, eyes like daggers and replied “don’t  say that to me.” I let Adam call my mom and sisters-I didn’t want to hear their reactions. I saved my frustration for Janet, my friend who is also the mom of a diabetic and celiac son. She always answered her phone. But this time, she was in the basement of Target with bad cell service and didn’t return my call for hours.

How was Sam? He was miserable. Just like us, he knew that diabetes was an awful disease which had already altered the structure of our family life. It was difficult to comfort him. I myself had trouble with the onslaught of “well-intentioned but unhelpful comments” from friends in our community.  Well. you’re the experts now. At least you know what to do. At least you are a pediatrician.  I restrained myself from screaming “Why can’t you just say that sucks?”

We had some important decisions we needed to make immediately. Sometimes it’s good when life forces you to forge ahead, placing one foot in front of the other. One month from date of his diagnosis, I was planning to take my older two boys to Israel for my nephew’s Bar Mitzvah. We had been looking forward to this trip with my family for years.  How hard would it be to take a newly diagnosed diabetic and celiac, tree-nut allergic child to a foreign country? I had visions of dehydration in the desert heat of Masada. In the end, we did it. It was challenging, harder than I imagined, but we wanted Sam to get the message that diabetes should never hold him back from anything he wanted to do. The same went for his soccer. He had just made a new travel team in a neighboring town. The coach was also a podiatrist, a specialty all too familiar with diabetes, and he encouraged Sam to play right away starting from the day  after he was diagnosed. I will always be grateful for the enthusiastic support of his team.

Am I still a nice person?  I like to think so. But for those of you who have kindly commented  on my positive energy and grace, you should know that it has been a work in progress.  In between fingersticks, phone calls, and mood swings affected by extreme blood sugars and puberty, I work hard to focus on the snapshots of my kids which make me smile. That way, when people ask me,” How are you, and how are the kids?”  I can answer “they’re doing great.”

Work is Good

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I just completed my first month of work at Pediatric Associates of Southern Westchester and… work is good!

What surprised me was how quickly I started to enjoy working. I was fully aware of some of challenges: the paperless, computerized system (new to me), navigating a busy new office with different protocols and personalities, and brushing up on new vaccine schedules and antibiotic dosing. The biggest challenge is mental expenditure. After all, work is work! Everyone knows that work requires not only a commitment of time, but a commitment of mental energy and emotion. Given the breadth of my own family’s medical needs, it had been a long time before I could even think about adding work to my plate.

So, how does it feel to be back taking care of other children, other families? I love it. I remember how much I truly love working with children!  It feels great to answer questions and to put my education to the use for which it was intended.  Over the past five years questions ranged from, “Mom, where are my socks? … how many carbs and are you SURE its gluten-free…?to … should we start the steroids for his asthma, or will it make his blood sugars too high?”   My pediatric expertise helped a little, mostly when the diabetes was complicated by other medical issues. Diagnosing and treating patients who have issues beyond the scope of my children’s issues is, for lack of a better term, refreshing. I am helping them, even as I walk them out of the exam room.   I do not need to take their medical problems home with me. Being one step removed from the medical issues of my patients is an important distinction from the past several years at home with my family.

How is my own family doing? So far, they have been good. The school nurses call or text about Leo’s blood sugars, and my patients don’t seem to mind the very brief interruption. The days are busy, sometimes head-spinning and often no bathroom breaks for several hours. I completely lose track of time. I am happy my own children have the structure of school to check and report blood sugars. The unstructured time will be more difficult, I am sure.

And the juggling act of every working mother?  Shopping at four different stores to accommodate the dietary restrictions is challenging, and making the kids their favorite foods “re-heated, not fresh” isn’t perfect. Leo asks me daily about my work schedule (which is about 23 hours/week) and Ben sometimes waits for me to come home to start studying.  It is very heart-warming to hear the pitter-patter of feet and feel the warm hugs when I walk in the door. Those moments might be one of the best parts of going back to work.  Then, of course,  I start hearing … I’m hungry …What can I eat?  Part of me wants to run back to my car. But, that too, is a “joy” of motherhood…


MDMommy Back to Work

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Pop the champagne! I am going back to work. Starting in May, I’ll be working part-time in a private pediatric practice in New Rochelle with three other women. I’m excited to get back into practice. Over the past 5 years, dealing with my own children’s many issues has been akin to running a multispecialty  clinic in my own house. But taking care of other children is a huge step! Of course I am a little nervous about taking on the responsibility of new patients, but I figure this is as good a time as any.

The decision to go back to work speaks volumes about the state of our family. At least for the moment, the children have reached a certain level of stability. Type 1 DM is never predictable or stable, but their control has been better over the past 6-9 months. Having Leo in school with a great nurse has made a huge difference, and I have been training her to make decisions without me so she doesn’t need to call me five times a day. It’s not that I mind when she calls, but she is getting to know his patterns better.

What about me?   I have accepted that I cannot cure diabetes.  I will continue to manage my children as well as I can. This is challenging and often heart- breaking  work. Just this morning, Sam cried after a painful site change and Leo’s blood sugars were too high last night for him to have dessert. Why on earth would I want to expand my panel of patients?

I can’t cure my own kids, but it may feel good to go back to work where I can diagnose and treat a strep throat or an ear infection. I can reassure an anxious first-time mom that she is doing a great job with her newborn.  I think this will be gratifying. My own kids are also getting bigger! I miss seeing the wonder of a nine month old as she begins to discover the world, the feisty pre-schoolers who usually save their tantrums for outside the office. Spending time with my 5 month old niece has reminded me of these fun stages. (See Magic of a Baby post

This did not happen overnight. The day after Leo was diagnosed, I asked “How can I go back to treating sniffles?”  I was overwhelmed with enormity of diabetes and worried that I would never again have compassion or patience for simple childhood ailments. For a time, I winced when people  complained to  me about the difficulty of raising children who were “picky eaters.”  What makes me ready now?  I can’t say for sure. Time, adjustment, acceptance?  I also realize that pediatrics and parenting share some basic skills. While some problem-solving may be scientific and clear-cut, both require a degree of intellectual creativity and patience. And who knows? As many career moms claim about their own professions, there is a good chance that on many days I will be more successful at doctoring than I will be at parenting.

So, here’s to going back to work. Again. Outside the home. For other people. To my friends, family and mentors who have encouraged me to take this step, I thank you. To my wonderfully supportive yet understandably apprehensive husband, I love you. Even during the bad nights and weekends on call.

I’ll keep you posted.

Mom’s Report Card: The A1C

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Tomorrow is our quarterly visit to the pediatric endocrinologist where we speak to the doctor after the kids are weighed, measured and we test their blood’s HbAlc level. The hemoglobin A1c measures blood sugar control over the previous 3 months. When blood sugar is high it sticks to the red blood cells.  The  most simple way to describe it is that the amount of “stickiness” or “glycosylation” can be tested every 3 months, the average lifetime of a red blood cell.

A normal A1c value is under 6. For children, endocrinologists say anything below 8.2 is fine in order to prevent complications from high BG’s. Doctors find the A1c’s somewhat useful, especially with teens who may be less compliant with monitoring themselves. But there are dangers in trying to attain perfect A1c’s as well.  Too many low BG’s aren’t good because they bring a higher risk for seizures, loss of consciousness, or worse…

In this day and age, advanced technology allows for easier testing and the ability to give insulin through a pump instead of injections. Leo’s  glucometer  may be used as a remote to tell the pump how much insulin to give him while he runs around the room (as long as he doesn’t run OUT of the room)!  What can be easier than that? In the past, people had to boil syringes and often went several weeks or months to check a BG. Before insulin was discovered in 1921, Type 1 diabetes was a death sentence. These patients usually survived up to one year after they were diagnosed. I still shudder at the thought of this, and always will.

Of course we are grateful or these miraculous advances, but they come with a price. As parents we do anything and everything for the health and well-being of our kids. This is seen in every aspect of life, certainly not just diabetes. The ability to micromanage blood sugars by testing 15 times a day and constantly tweaking insulin regimens can make anyone CRAZY.  Parents quickly learn what I and many other doctors never knew until I was in it myself: diabetes is like a living, dynamic entity. By this, I mean that no matter how closely we count carbohydrates and adjust insulin amounts, we often can’t get it right. As I have mentioned several times, there are just too many other factors. But that doesn’t stop us from trying even harder! We feel that we have more control and will do whatever it takes. Part of it is parental guilt, I’m sure. They are our children, and nothing is more important than their health. We become stressed, frustrated, and exhausted.

Early on after my kids were diagnosed, my friends saw the hypervigilance that diabetes required and asked me “what did people do before this technology?” My brief reply was “they may have had more complications.”  The detailed list of complications, however, was imprinted on my brain since medical school and it ended with the worst one: shortened lifespan.

At a recent meet-up for parents of diabetics, one mother spoke about her 22 year old son who is a bright, successful, athletic college graduate diagnosed with Type 1 diabetes at age 3. Her son is doing well now, as do many Type 1 diabetics.  She said, “I actually think it’s so much harder for all of you now since you have these tools, you have so much angst that comes with the perception of having more control.” In a way, we were all relieved to hear her acknowledge this.  Although we appreciate the technology, we feel helpless when the erratic blood sugar swings occur despite our best efforts.

As concerned parents, what are we to do? The best advice I have heard is the following : Living with diabetes is a marathon, not a sprint. I try to remember this.  If it was something that affected our own health, maybe we could let up for a while and take a short break from it. Because it’s our children, we continue to monitor at the intense pace that technology allows. While they are young, we can still help our children manage their diabetes and teach them how to be independent and responsible.  We learn that it is a marathon, and there are bad weeks and bad months. At 6 years old, Leo’s diabetes management is much easier than it was over the past 5 years, while Sam is entering adolescence and his management is becoming more difficult. I can only hope that I have succeeded helping him learn how to care for himself. After all, this is what they will need to do after they leave our homes for college and beyond.  Then we can stand by the sidelines and cheer them on as they continue to run the marathon.

I wonder what their A1c’s will be tomorrow…

March Madness

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In the winter of 2011, Leo was hospitalized for several days for a bout of gastroenteritis that further complicated his diabetes management.  While this hospital admission was not fun, at least there were no surprises   (i.e. no unexpected diagnoses). After his discharge, my husband Adam realized that he needed to start addressing his own health issues.  He had been blaming his stomach discomfort on his reflux but his symptoms were getting worse. While Leo and I were in the hospital, Adam developed left sided chest pain after shoveling our driveway. This was obviously worrisome and he FINALLY agreed to see his doctor.  Thankfully, his cardiac work-up was fine.  But his GI work-up revealed a clear-cut case of “cholecystitis” which means gallbladder disease/stones and inflammation. So we scheduled surgery ASAP. It was done laparoscopically (minimally invasive) and he recovered well.

Gallbladder disease is not uncommon for people in their 40’s, and patients usually recover well because the procedure is now done laparascopically. What I didn’t tell Adam is that when I was doing my third year clerkships in medical school, my first patient was a man with terrible complications from a laparascopic cholecystectomy.   I also recall that Andy Warhol died unexpectedly from a routine cholecystectomy at New York Hospital, on a floor right near the pediatric ward where I interned.  One of the problems with being a physician is that you can always think of a potential bad outcome. That is what we are trained to do!

I must admit that upon hearing Adam’s diagnosis, I was concerned for him but there was a little voice inside of me screaming “what about me?” I was so exhausted from the week in the hospital with Leo that I couldn’t imagine where I would get the strength to care for the whole family. Adam’s post-op recovery entailed 2 weeks of no driving and 6 weeks of not lifting anything heavier than 10 Lbs. So many people wanted to help, but it is hard to help out with what we do. All the carbohydrate counting, measuring, monitoring, cooking, pump site changes, growth hormone injections, etc…

A few days after Adam’s discharge we celebrated the festive holiday of Purim,  when the Jewish people commemorate  their cunning victory over an evil Persian leader from ancient times. I took my boys to our temple’s Purim Carnival, which is always loud, over stimulating and filled with food that my kids can’t and shouldn’t eat. It was challenging not to have Adam with me. Although it was fun to see our friends , I couldn’t wait to get home.  Monday, the following day, was a dismal mix of rain/snow/sleet. I was so tired that I forgot the kids were staying later at school for me to pick them up for Tae Kwon Do. I realized this when they weren’t home by 4:15 and drove to school to pick them up.  I was too exhausted to bring them to TKD, so I just brought them home. I remember driving and thinking   now it’s 5pm and I am so tired that I either need a nap or a large coffee. Leo and our dog Pepper were excited to see the boys and ran around the hall entrance excitedly. Within minutes of taking off my shoes, I heard a loud scream. There was Leo, holding his head, blood gushing everywhere. Other than where the walls meet, there are no sharp corners in my house. I have seen enough head injuries in my practice from fireplace mantles, tables and entertainment centers that all of the corners in my house are padded. Even our piano bench has a “diaper” on it.

Leo had collided with the wall corner, and he was standing on our carpet while his head continued to bleed. After bringing him to the bathroom to stop the bleeding with a pressure dressing and ice, we got ready to go to the ER and meet our friend the plastic surgeon (I now have his cell number). Leo is a resilient kid. He managed to eat some dinner while I got his test kit/food and his Nintendo DS ready. As Adam helped put on his shoes, Leo looked up at us and asked “How many days am I going to have to stay in the hospital this time?” God Bless my brave, funny, rambunctious boy….

It was a non-eventful trip to the ER. Irrigation to the wound site, 3 staples to the scalp, and we were quickly on our way home. With Leo’s friendly face, big cheeks and sense of humor, he is a magnet for good will and smiles wherever he goes. And he is so tolerant of any physical manipulation that people are always impressed with his stoicism.  Although the outside world doesn’t see his tantrums and devilish behavior at home, I’m sure it’s not hard to imagine.  But, as everyone knows, all of what happened on that particular Monday is regular kid’s stuff. It had nothing to do with diabetes or other chronic issues. The fallout is that I was even more drained that night. I went to sleep fantasizing about a time in my future when I wouldn’t be so important to so many people.

At school the following day, Leo was excited to “show and share” his wound and staples with his classmates. Later that night I brought his brothers to watch him in the nursery school Purim Play. Low and behold, our plastic surgeon sat in the row behind us, watching his 2 year old twins perform…

‘Tis the Season…

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‘Tis the Season…for Colds and Flu

7am:   Sam, my 12 year old wakes up not feeling well this morning and doesn’t want to go to school. He generally enjoys school and he looked fine, but his blood sugars had been high overnight.  This sometimes this indicates the onset of a cold. With diabetes it’s hard to separate all the factors. Sometimes, after a night of consistently high blood sugars, he wakes up more cranky than usual.  We are able to give insulin through the pump during the night to bring the blood sugar down without waking him, which, of course we did. The body doesn’t feel well when so much sugar is coursing through its veins. Is that why he woke up sluggish and cranky?  But, then again, he’s a pre-adolescent boy with a math test today. However, I must bear in mind the other diabetic in our household: When our 6 year old son wakes up from a “high” night, he, too, tends to be extra cranky.

Kids get on the average of 8- 10 colds per year and they are more frequent during the winter season. I didn’t need my MD and specialty in Pediatrics to tell me this.  But it’s so much harder when they have other medical issues. With diabetes, anything that sets the body slightly out of whack can affect their blood sugars. This includes growth spurts, viral infections, weather changes, altitude and medications. When my kids get sick, this triggers their asthma which requires them to take more medications so they can breathe well and not get sicker. Also, when the blood sugars are high, it is harder for the body to fight infection. This is because the white blood cells (neutrophils) work more slowly. It is a vicious cycle. It is easier for them to get sick and it is harder and takes longer for them to get better.  They feel worse when they are sick because abnormal blood sugars make you feel like CRAP. So that adds more crap on top of your general sick crappiness.  It is also hard to predict into what a cold will blossom. One summer his cold at sleepaway camp triggered a full-blown asthma attack which required steroids. His blood sugars were so unstable he went to the ER and stayed home for a week. Thankfully, this is not always the case, but there is the tension of never knowing which way the wind will blow. We can only hope for the best.

7:45 Sam needs to either get out of bed and get dressed for school or stay home for the day.  I am hoping for school. He has no fever or worrisome cold signs, perhaps just a little wheezy. He gets out of bed, takes his insulin, inhalers and breakfast and goes to school.

8:45 Sam calls from school to tell me his BG was 354, so he felt high, but he also felt low because the albuterol  for asthma makes him feel jittery and low. I tell him to retest and call in 20 minutes.. He does with this report:  his blood sugar is even higher and he is starting to cough. No doubt now: Time to go pick him up.

While Sam leaves the room to pack his bag, I am grateful the school nurse hears me out over the phone. “I feel bad for him…it sucks for him to feel like this and I can’t do anything to make him feel better.”  She replies, “But I see him every day and he has become so strong, so robust as a person. I see others who suffer more for far less things. Sam is doing fine.”

Her kind words reassure me. Of course, isn’t that what we all want to hear? That our children are able to confront their challenges and master their environments?  I’m certainly thankful that he is able to show these strong character traits to the outside world.  It makes me proud and it makes me smile. But, my smile is temporary. Reality hits as I approach school and I wonder how bad this cold will be? How will it affect his BGs over the next week? And, finally: how long until we return to a level of “normalcy?”

Gratitude: Top 10 List

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At the end of each calendar year, I do what most people do.  I take stock of life over the last twelve months and prepare to move forward into the new year. The fall of 2012 is forever scarred by the tragedy in Newtown and the disaster that Hurricane Sandy left in its wake. Of course, I am very saddened by this, and  I wish the families comfort and strength in the future.

Our family has been surprisingly … ok.  Upon hearing about how we fared in the storm, one friend remarked, “Wow, you sure threw everyone off this time.”  Most of my friends lost power for extended time periods and a few had property damage.  We felt grateful but awkward about our fortunate situation.  We had what I described as “power guilt.” For the first time in a while, we found ourselves in a position to help out the people who have given us so much. I discovered something else as well. Although I do believe in the oft repeated phrase “it is easier and more gratifying to give than to receive,” it can also be frustrating. Sure, we hosted meals, friends, electronic devices, showers, the occasional dog and hamster.  But I quickly learned that my grateful friends wanted what we couldn’t give them: the comforts of their own homes.

To our many friends who have been there for us in countless ways, I want to thank you. These are tangible ways they  have helped.

1) My high school friends: Upon hearing about  Leo’s diabetes diagnosis compounded by the celiac disease of the other boys, they generously contributed much needed gift cards to Whole Foods.

2) My friend researched and distributed GF recipes to people to prepare meals for us during the week that Leo was diagnosed with diabetes. She even requested the chefs include the carbohydrate counts with the food delivery!

3) The friends who drove to pick up our cars after we rode the ambulance to the tertiary care hospital from the after-hours clinic.

4) My friend who packed her three young kids in the car and drove to a GF bakery across the county to  drop off treats for Ben when he was in the hospital with swine flu.

5) My anesthesiologist friend who has supplied us with several years of tegaderm  tape. These  have made the kid’s  pump sites  last longer and reduced  my headaches from insurance companies.

6) Our friends who welcome the challenge of having us over with our three rambunctious boys and their crazy dietary restrictions.

7) My friend who ordered a Carvel cake with fudge in the center instead of crunchies for her son’s birthday so Sam could eat it.

8) My friend who always has a cabinet of GF treats for Sam for playdates .  One less worry for me.

9) Our friends who generously support us each year in JDRF Walk to Cure diabetes

10) The random calls, texts and emails just checking in…

This list has a few intentions. First, it is meant as a huge “Thank You” to our friends for all you have done, we will never forget it. We are blessed to have you in our lives. Second, for those of you in similar situations who just don’t know how to respond when people ask “how can I help?”, refer  them to this list. Deep in our hearts, we hope and pray for a cure for diabetes. In the meantime, there are many tangible and thoughtful ways that others can help you. Please accept their assistance. Giving is contagious, and one day you will have the opportunity to return the kindness.

Wishing everyone a wonderful year in 2013!

The Magic of a Baby

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My heart has been smiling since last week.  My sister Jodi just had a beautiful baby girl. Now her is family is complete with one son and three daughters. My mother and I were lucky enough to be in the hospital so we could share in her excitement first hand. They didn’t know the gender in advance, so it was fun being among the first to find out! It didn’t matter as long as the baby was healthy and the delivery went well. We were ecstatic. As my mom and I flew past the labor and delivery receptionist who had seen us hovering all morning long, we shouted, “She had a girl!” She smiled and replied “Congratulations! The first grandchild?” “No”, we laughed, “the 10th!” She seemed surprised at our level of enthusiasm.

Flashback to fifteen years ago when my nephew Jason, the first grandchild, was born. I was a second year pediatric resident in NYC when I found out that my sister Alyse was pregnant. We were over the moon with happiness and anticipation! Since she and my brother-in-law were living in Memphis at the time, it was hard to follow her pregnancy so closely. But when her due date approached and Jason was born, my excitement was palpable throughout the department. One of my neonatology attendings even bought a bib for him from the medical school book store on the day he was born. “Thank you so much, but why did you buy it for him?” I asked. “Because,” she replied, “I never saw someone so EXCITED about becoming an aunt.”

It was definitely easier to be excited about becoming an aunt than about becoming a mother myself. I was just too nervous during my own pregnancies. During my first pregnancy, I had pre-term labor  and partial abruption in my sixth month. The doctors were certain I would deliver early, and I knew that a baby so premature would have a difficult time surviving. My NICU experience in residency had made a lasting impression on me: I was desperate to keep this baby to term. With every drug under the sun, they stopped the labor. I was sent home on a terbutaline pump (similar to my sons’ current insulin pumps), 3 months of strict bed rest and twice daily monitoring.  I became best friends with the nurses from the health care company in Atlanta who read my contraction reports and called to check in on me.

Thankfully, Sam was born at term, almost immediately after I went off the pump. A beautiful, healthy baby for which we were so grateful! He was born during Hannukah, and he was truly a gift. My second pregnancy followed the same pattern: pre-term labor by 6 months, terbutaline, and bed rest. But this time I also had gestational diabetes. Ben had a very concerning finding on ultrasounds and they thought he would need surgery right after birth. I had my pediatric surgeons lined up. Fortunately, he too was born healthy and never needed surgery.

So, how did I feel about these pregnancies? It sounds silly, but in addition to being worried and nervous for 3 months at a time, I was a little sad I never got to show off my big belly. My maternity clothes hung in the closet with the tags still on because I never left the house other than doctor visits. One of my happiest moments was when a man gave me a seat on the train. That was a week before I went into hibernation. Was I jealous of my sisters and friends who sailed through their pregnancies?  Maybe, I don’t remember. When it came to health issues, I was way too superstitious. Life could change in an instant. Alyse survived a rare type of thyroid cancer at age 25. Two of my friends from residency had children who did not survive their first year of life. I also have friends with heartbreaking infertility issues. I had perspective. So although my pregnancies were high maintenance and stressful, I knew it was a small price to pay for the outcome. The most difficult part was the unknown. During those months of bed rest, the days and weeks crawled at a snail’s pace. There was never a guarantee. Our family and friends were also anxiety-ridden throughout these months. My long distance nurses were accurate when they promised me that in time, these 3 months would seem like the blink of an eye.

I haven’t thought about any of this for a while, but a pregnancy and new baby in the family triggers these memories. Perhaps these challenging pregnancies taught me some life lessons, lessons I needed to call upon when my children, born healthy, developed chronic health conditions.

  • Patience is a virtue.
  • Worry may seem like a necessary evil, but it’s a completely ineffective and an inefficient use of time
  • Whenever possible, be optimistic.
  • When there is a reason to be happy, BE HAPPY. PERIOD.

What can be better than the stirrings of a new life, a new baby in the family?

The magic of a baby. The first loud cries, the precious coos, those tiny feet! My niece is perfect. Even her name is beautiful, biblical and strong. I will never forget standing with my mother next to the bassinet before she was sent  down to the nursery for the first time. Barely one hour old, and swaddled comfortably after being fed by her mom, she was staring at us and listening to our voices.  We know what a blessing she is and we were elated to welcome her to the world.

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…

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.