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.


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

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…

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…