You can’t have your cake and eat it too

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What is the best way to describe the past 6 weeks?  The pre- Bar Mitzvah frenzy, the magical experience of the day itself, followed by a 2 day hiatus before the onslaught of Thanksgiving and Hannukah, the blizzard on the night of the Bar Mitzvah kid’s party!, finals week at school, the 12 day “staycation” which combined my busy office workload during flu season with extended unstructured time for the 3 boys at home, the uncooperative polar vortex with frigid temps and inconvenient snow-days.   Finally, for the first time in 6 weeks, I sit home alone at my computer and attempt to reflect and process it all: the highs and the lows…the deep pride and the prickly frustration…the gratitude and the disappointment…the solemnity and the chaos.

 “You can’t have your cake and eat it too”

This English proverb almost became a reality for us 3 nights before the Bar Mitzvah, when I received an email from the bakery that they were no longer able to accommodate our order for a gluten-free cake. They claimed that they had a lot of orders for Thanksgiving the following week, etc..  At 10:30 pm, there was little I could do other than curse and send profanity laden emails to my inner circle of friends. I scoured the internet for kosher, gluten-free bakeries in the metropolitan area, which I had done several times in the past few months.

I must backtrack and express why a cake is both so important and so difficult. Since Sam was 5 years old, he has eaten a “different” cake than his friends or family at every birthday or school/friend celebration that he has attended. We make cakes for our children’s own parties, and I can dissect out the chocolate crunchies from Carvel cakes, but it is always different.  For years, we had been saying that for his Bar Mitzvah, we would get him a “bakery-made” Bar-Mitzvah worthy cake with his choice of frosting for his special day. A great-looking cake for everyone to see during the speeches when everyone focused on the family.  Since it was in the Temple, the cake needed to be from a bakery with kosher certification as well as gluten-free. It also had to taste good; instead of being hard to use as a bowling ball, with typical gluten-free density. Several months back, I had found a GF bakery in Connecticut which had just obtained kosher certification. My sons had tried some of their cakes at a vendor fair last year and loved it. But 3 weeks before the Bar Mitzvah I brought home a sample cupcake with frosting, and they HATED it. Apparently it is difficult to make delicious vegan vanilla frosting. We didn’t need it to be vegan, but it was the only bakery that was also GF and kosher. I found 2 bakeries in Manhattan and Brooklyn which would have fit the bill, but they only made cupcakes, no big cake. I finally found a local bakery who assured me they could accommodate my request. I waited nearly a week for them to provide sample cupcakes, which my kids approved.  Perhaps it was the final request for vanilla frosting which put them over the edge, I’m not sure. What I knew when I got that email from the bakery backing out at the last minute, was that the clock was ticking, and I did not want to disappoint my son.

Then I remembered about the woman I had met during baseball season who told me she had left her corporate career and started a cake-decorating business called “Enchanted Icing.” Nancy wasn’t kosher, but she was definitely allergen-conscious, and so I was hopeful. Since I had no contact information, I reached out to her through Facebook, and she replied to me the next morning. “I don’t have an event this weekend, and I think I can help you.”  The next obstacle was getting through to the synagogue. There was a strict policy about bringing in outside food. Our Rabbi was in Israel, and the Executive Director was unavailable until 1 pm. That was a long time to wait for the approval to have an “Enchanted Icing “ cake, provided that Nancy baked everything in the synagogue kitchen  without bringing in any outside cookware, and all of the ingredients needed to be completely kosher and unopened. While I sweated out the answer during that hectic work day, my friends texted me from their work, offering to bring home kosher GF baked goods from various parts of Manhattan and Long Island. One friend offered to knock down the door of the evil bakery and physically harass them! Thankfully, Nancy graciously accepted the challenge, and we were set to go. By that evening, I felt like a completely different person.

Needless to say, the cake was beautiful and delicious, and enjoyed by everyone, especially those with food restrictions.

We also reserved a pool for the evening after the Bar Mitzvah so Sam and a few of his friends could splash around and decompress. Of course, my in Laws called from the hotel as they were checking in to let us know that the pool was closed for construction! But that’s another story…


Coming of Age

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We are in final planning stages of Sam’s Bar Mitzvah. This milestone which represents the rite of passage to Jewish adulthood occurs when a boy turns thirteen years old. Traditionally, the Bar Mitzvah boy is called up in synagogue to read from the Torah.  It is a time when we are surrounded by our loved ones who have often travelled a long distance to share this special time. The celebration afterwards ranges from a simple luncheon to an over-the-top gala event and everything in between. People have been quite creative lately: a boat ride on the Hudson (also called the “Yacht Mitzvah”), a trip to a water park , rock-climbing, and car-racing. Regardless of which you choose, all are flooded with stress of guest lists, invites, favors, decorations and food. Ours will be a luncheon followed by a kids party with DJ and games. We are excited and anxious.

As with all milestone events, we are often struck by the juxtaposition of past events and how they affect  us as the time approaches.  I think back to my own Bat Mitzvah, how hard I worked, how excited I was, and how devastated I was when my grandmother passed away that very morning.  Thirty years later, I can still remember how I first heard the news: standing in the hallway behind my mother, who did not realize I was awake,  as she broke the news softly to someone over the phone. I was shocked and frozen with grief. As she slowly turned around I stared at her: my mother who had just lost her own mother and yet was with me, rather than at the hospital bed in Florida. My Grandma Jeannie had only been ill for a few months, but her long years of treatment for rheumatoid arthtitis had taken a toll on her heart and she deteriorated rapidly. Even so, nobody thought she would pass so quickly. Her final wish was that Grandpa Max would fly to New York for my Bat Mitzvah. He didn’t know he would never see her again.

Because my Bat Mitzvah was a Friday night service and Shabbat dinner we went ahead with our plans, and we rescheduled  the kid’s party a few months later. During the funeral that Sunday, we stood in the torrential rain, keenly aware how the skies opened up and cried for the loss of my dear grandmother .Thankfully, we were surrounded by our friends and family when we needed them the most, supporting us throughout that unforgettable weekend. To this day, I will never know how my mother and grandfather got through it, beside me the whole time. Reflecting back now, I see how my Bat Mitzvah was truly a “coming of age” experience. Although I could not process it then, this was the first time I learned that life made you take the good with the bad, the bitter with the sweet. It was the first time I needed to take a deep breath, summon all my strength, and move forward.

My Sam has had enough unpleasantness in his life, so much so that I really want him to enjoy his Bar Mitzvah. I know the important thing is that he feel prepared, confident, and proud that morning. When people have spoken to me over the years about how frazzled they become with Bar Mitzvah planning, I would think to myself “I know how bad things can get, I won’t get hung up on all the details.”  Hah. As my husband  says..the devil is in the details. I have never enjoyed entertaining or planning parties,  that is not my forte.  With Bar Mitzvah planning there are so many moving parts: the service itself, the preceding Friday night dinner, the kippot, the photos, the programs, the wardrobes, the menu, the out-of-town guests.  It is easy to become overwhelmed. Yet, I remember my promise to myself: enjoy the excitement, enjoy planning a celebration, focus on the significance of this day in Sam’s life. It’s all good.

Once again, I take a deep breath, feeling lucky that everyone is healthy , or at least status quo. That is huge. My biggest concerns are : how will Sam’s BG’s will be that morning. I don’t care so much about the number, but more about how he feels. Sometimes he feels fine when his BG’s are high, sometimes he feels so awful he wants to just crawl into bed (like last night). I am hoping that the adrenaline will boost his energy level regardless of his numbers. Also, how will their GF bagels taste since they are inedible at room temperature, will they be re-heated properly in the oven? Which leads me to the next, less important but still important..How will the centerpieces look?  Will people be happy with their seating arrangements? Will there be an early Noreaster? Will I like my hair? Let’s face it, on some level it all feels important.

15 days to go….   I’ll keep you posted…


Mid-Career Access Road

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The cover article of last week’s  New York Times magazine  “Mid-Career Time Out” (click here for article) by Judith Warner discussed the early 2000’s trend of highly educated women who left prestigious and lucrative careers in order to raise their families. Ten years later, the author discusses the challenges many of these women have faced: difficulty in work re-entry, stress on marital relationships from shifting balance of power and expectations, raising a family on a single, often reduced income due to the recession, and a change of identity and self-worth.

The article interested me because I was a full-time working mother who wanted to work less, especially after the birth my second child. Unable to reduce my hours because that would mean forfeiting our health insurance, I remained a “full-time conflicted working mother.”

My love for children had influenced my decision to become a pediatrician, and I was spending more time with my patients than with my own kids. Due to my hours, I was rarely there for pick-up or drop-off during Sam’s first year of pre-school. He was the youngest student in the school’s history to take a bus to school and back home to our babysitter. Knowing that thousands of women shared my experience  didn’t make it any less painful for me. I was sad that I was missing so much of this magical time in their lives. We made a family decision that after my third child, we would bite the bullet and I cut my work week to 3 days.

Nine months into this improved schedule (which made a huge difference in my quality of life), we found ourselves in the pediatric ICU with Leo in diabetic ketoacidosis. Type 1 Diabetes in an infant requires a degree of hypervigilance that is emotionally and physically exhausting.  Oct 1 2007 was my last day of work until I returned a few months ago. Relating it to the above mentioned article, I would call my experience a “Mid-Career Access Road” replete with potholes, construction zones, and broken traffic lights. For a while, it seemed liked more of an off-ramp, and I did not know when or if I could return to work.

Here is a list of experiences on the Access Road:

1.  Endocrinology sabbatical (still doing it)

2.  Gluten-free shopper and baker (still doing it)

3.  School lunch lady volunteer (cleaning tables and buttering sandwiches which my kids can’t eat-but I got to see them socialize during lunch)

4. Soccer mom

5. Elementary school art appreciation/history teacher (a program run by parent volunteers –don’t              worry-we had training sessions to make up for my lack of art history knowledge)

6. Fundraiser (not too shabby, our family’s team has raised over $150,000 for JDRF)

7. Lab courier (my least glamorous role, I brought a stool sample of my friend’s child to the hospital lab because it was time-sensitive and didn’t need to miss work)

8. Lobbyist (see MDmommy goes to Washington http://mdmommy.com/?p=447)

9. Class mom

10. Board Member (for JDRF and my children’s camp)

11. Mommy blogger

The silver lining is that I was able to be more present in my children’s lives than I initially thought I would. I am grateful for this. Make no mistake about it, I would have given up all these experiences in a heartbeat if it meant my children wouldn’t have to live with their health conditions. I have learned over time that we lack control over when and which challenges confront us. We do control how we react and what we do when they occur.

Not all women have control over their decision to opt-out of the work force. Certainly, no one can foresee all the sequelae of their decisions.

I am merging from the access road back onto the highway. Although the roadwork has followed me, I have become a better navigator. For all the times I may have asked “WHY” or said “ENOUGH”, the obstacle-ridden access road has prepared me for re-entry into my pediatric career.


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…

 


A Weekend of Debuts… with Mixed Reviews

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This past weekend was filled with debuts for our family: Sam attended the first Bat Mitzvah of one of his own friends.   Ben starred in his school play.  Leo played his first “coach-pitched” little league game (a step up from t-ball, he reminded me).  All good things, but I was definitely a bit stressed about how the “food-focused events” would affect my kids, both physically and emotionally.

The Bar/Bat Mitzvah “circuit” occurs throughout school grades 6-8. It signifies the coming of age and onset of adult responsibility according to Jewish law. Celebrations range from a simple luncheon after the service to extravagant parties. For our family, the most difficult factor is obviously the food. The logistics of attending Bar mitzvah often include complicated carpool arrangements, conflicting schedules, sports, other family events, and late night pick-ups. I’ve been hearing about it for years. Since Sam would be gone for most of the day and the Bat Mitzvah was 40 minutes away, I needed to make sure he was prepared for anything. He was not in a school or camp setting where he had back-ups of everything in the nurse’s office.

Checklist for Sam’s bag:

  • Replenish test strips -Glucose tablets/sweet-tarts for lows,
  • Glucagon pen for bad lows (unlikely, but better to be safe)
  • Epi-pen for his anaphylactic flax allergy (flax is included in many foods today, especially low-fiber GF foods)
  • Benadryl  (for his less severe oral allergy symptoms which occur with most fruits and nuts)
  • Lactaid pills in case he is lucky enough to eat ice cream instead of eating the gluten-free cupcake I packed for him (which only tastes good if it’s heated directly prior to eating).
  • Whoops:- WHERE IS HIS PHONE? GO CHARGE IT! NOW!!

Everything was ready by the time his friend came to pick him up.  I breathed a quick sigh of relief as I saw the two of them exchange smirks at their dress clothes, as if they were saying “Well, here we go.”

Although Ben was excited to be chosen as Conrad, the star of Bye–Bye Birdie, he wasn’t so happy about the cast party that was planned for the break between the morning and afternoon performances. Everybody was talking about the special Bye-Bye Birdie cake, brownies, and pizza. I told him I would substitute as well as I could. Unfortunately, it was logistically impossible to get fresh GF pizza to the school in time for the party. There was no way to reheat a cold slice so it would be edible. I tried my best to distract him from the party and focus on the play, but he was quite upset and begged me not to make him go to his cast party. “The cake and all the food is going to look so good, I’m going to be annoyed when I see and smell it!”

It’s hard to be different, especially when the substitutions just don’t cut it. My older boys have had celiac disease for 7 years. Should they be used to this? Sure, but it’s never that easy.

I do say: “Focus on the positive, remember everyone has something they need to deal with.” I’m still trying to figure out the best way to diffuse their stress while anticipating an event and deal with disappointment which may occur. I know that in time they will learn to manage their expectations. Explaining how they also have friends with other food allergies only goes so far.  They are young, and they have big eyes and hungry stomachs. The snacks I send in the Tupperware are, according to them, never quite as good.

So, how did the weekend turn out?  Sam enjoyed celebrating with friends, but he did have a few low BG’s because lunch was delayed. He also made a point of telling me that he would have loved to try those “enormous cookies and brownies”. Ben woke up with laryngitis on the day of his performance, but he did his best and he looked smashing as Conrad Birdie. He ate what I brought him for the party, grimaced a little at the cake, and then ran off with his friends. And, Leo, my little slugger? He hit a double in both of his games, and he was so proud that he beamed while sharing this news with everyone.

Despite the hassles and tension created by food restrictions and diabetic concerns, we managed to squeeze out a good weekend of debuts and created some great memories. Similar to photography, we can try to focus on the best ones, delete the bad ones, and be more prepared for next time.


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 http://mdmommy.com/?m=201211).

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.


MDMommy Goes to Washington

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I just returned from a few exciting days at a JDRF conference in Washington DC, where we advocated for our Congressman to continue to support diabetes research. You may ask how did this happen, given that you know I haven’t left my children for more than a 24 hour period since they developed type 1 diabetes (T1D)? Up until now, my involvement in JDRF has been both community outreach  and fundraising . A few weeks ago ,Michael, the Government Relations rep from our chapter notified us that he would be unable to attend this annual meeting and asked if anyone would go in his place. With the sequester and sensitive economic climate, it was important that we were represented.  Why not? A few days away with like-minded people advocating for a cause so close to my heart? Sure. As far as speaking to members of Congress, I looked forward to the opportunity. My father is an elected official; he has been a judge for over forty years. I have been speaking with politicians and strangers my entire life. Most importantly, the kids were finally stable enough for me to consider the trip. I started planning as soon as I cleared it with my husband Adam. I would be away for about 3 days.

The experience was…powerful. About 200 attendees from all over the country to represent people with T1D. The days and evenings leading up to our Capitol Hill meetings were packed with sessions and workshops.  One session gave everyone the opportunity to stand up and briefly introduce themselves and their connection to diabetes. We were not all parents of diabetics. Many people had diabetes themselves or were there for their affected spouses, siblings, grandchildren, cousins, nieces, nephews or friends. Unfortunately, many fit into more than just one of these categories. I was both moved and saddened by this. It was inspiring to feel the energy and commitment of this diverse group, but many stories demonstrated the tremendous impact of diabetes on the entire family. Not only is T1D a complicated disease, but it carries a strong genetic risk for future generations. There is strength in numbers, however, and we felt solidarity as a group in DC.  As a woman from Iowa said “the synergy in this room is palpable.”

The general tone of the conference was one I would call “optimistic realism.” We learned more about research developments like the artificial pancreas project as well as a new “smart” insulin and different ways to reboot the immune system so it won’t attack the insulin-producing cells. Most of us had heard about this research before, but was good to hear the progress.  I met some amazing people and heard firsthand some very interesting things: One woman was expecting to get a diabetic alert dog and other people were using new monitoring technology that I’ve been considering for my own children. A female attorney showed me the ankle holster where she holds her pump (what a great idea!). During the catered buffets and open bar receptions, we were able to relax, network and share some of our zany diabetes stories (see my favorites in a previous post  http://mdmommy.com/?m=201210).

It was great not to be “first call” for all the monitoring and planning at home, although my phone allowed me to be a close second. “Do I believe the packaging on the bag of GF bagels? 50g each? And Sam has running low in the 40’s tonight, I’m a little nervous about him going to sleep.”  A few of us got calls from our spouses during Sunday dinner asking what to pack for lunches and what they should tell the school nurse. We were in good company. We were keenly aware of the pervasiveness of diabetes and how it seeps into every aspect of our lives. But I felt that we had all been processing this for a while, and so we took comfort in knowing that the treatment of diabetes will only continue to get better and easier, until we have a cure. “Less Until None” was the motto used during the conference.

My favorite quote of the weekend was during the presentation of a remarkable woman, Suzy Watkins, who had used the artificial pancreas as part of a recent study. Recognizing the amount of thought  and decision making a type 1 diabetic makes on a daily basis, she asked “What will we do with the collective brain capacity of diabetics once a cure is found?” she asked. “We’ll find a cure for cancer or …(another disease)..”  It was a privilege for me to be among a group of such bright, thoughtful and dynamic people.

As far as the meetings on the Hill, they went well and we were appropriately exhausted at the end of the day. My only complaint about the weekend … I was really hoping for cherry blossoms since it was March in DC rather than the rain/snow/sleet we had. Oh well, there’s always next year. I’ll  have to come up with another excuse to take Michael’s place and have Adam watch the kids. Hmmm.


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…