In Which I Reflect on "Person First" Language

This evening Kittygirl decided that she isn't going to walk normally for the rest of the holiday season. Instead she's going to walk everywhere using the polichinelle walk. This is a dance step from her role in the Nutcracker last year. It's sort of akin to a high skip. I don't see the polichinelle walk phase lasting long, but it reminds me of one part of her identity. She's a dancer.

Both of my kids are dancers. Squirrelboy started taking ballet when he was four years old, but even before that he was moving to music every time he heard it. Kittygirl grew up going to the ballet studio, and it was logical for her to start in the mommy and me class when she was two (actually, the first class was a couple weeks before her birthday, but they let her slide in). She has continued to progress through the levels even though Squirrelboy (though he still loves music and isn't embarrassed to move to a beat), stopped taking ballet four years ago.

Kittygirl is also a gymnast. If you don't count a short class in preschool, she has only been seriously pursuing gymnastics since August, but even before that she was climbing and swinging on playground bars, balancing on boards, and trying out somersaults and cartwheels. She has already progressed to the intermediate class, and I have a suspicion that gymnastics may eventually push out dance classes due to lack of time.

I could add lots of other descriptors of Kittygirl. She's a social butterfly. She's a loyal friend. She's an animal lover. She's a hardworking student. She's an eager helper. And, yes, on top of all of these things she's a type 1 diabetic.

There's a movement within the diabetes community and other disability communities to use "person first" language in order to avoid identifying people primarily by their disability. So, for instance, you would not use the term "type 1 diabetic" or T1D but rather "person with diabetes" or PWD.

First of all, I want to make it clear that I don't have a problem with this movement. It's never right to identify a person using just one aspect of their lives. Type 1 diabetes does not entirely define the lives of people who live with the disease. If a person dislikes the term "type 1 diabetic" because they feel that it's a label that gives too large a role for diabetes, then I fully support that person identifying as a PWD instead of a T1D.

To me, however, the term just feels and sounds awkward. I don't refer to Kittygirl as a "person who dances" or "a person who does gymnastics." I refer to her as a dancer and as a gymnast. I don't refer to her as "a person who loves animals" or "a person who loves to help". I refer to her as an animal loves and as an eager helper.

None of these terms completely define Kittygirl. It would be unfortunate if people only thought of her as a diabetic and didn't look at her life on a deeper level. It would also be unfortunate if people only looked at her a gymnast and expected her to cartwheel her way down the schools halls. It would be be awkward if people only thought of her as a dancer and expected her to actually polichinelle walk everywhere for the entire holiday season.

However, there is no movement I know of to start calling dancers "people who dance" or gymnasts "people who do gymnastics." Somehow we realize that these terms don't completely define a person while we don't always realize that a term identifying a person with a disease they live with or a disability they have only reveals a small part of that person's life.

At this point in her life, Kittygirl owns the term "type 1 diabetic" and embraces it as one aspect of her life. If, as she grows older, she chooses to instead embrace the term "person with diabetes" or some other alternate term I will support her choice and try my best to remember to use the term.

So far, I have not come across anyone in either the PWD camp or the T1D camp spilling vitriol against the other camp. I hope this continues. Whether the "pancreatically challenged" choose to call themselves type 1 diabetics or persons with diabetes, they still have a lot more to unite them than to divide them.

In Which I'm (Sort Of) Thankful for Diabetes

I'm sitting in a comfy chair at my parents' house, looking at the woods out the window and listening to the rest of my family play Ticket to Ride at the kitchen table so my brother's dog doesn't attack the gameboard (yes, we did decide to bring that bag of board games). Chicken and vegetables (prepared by Squirrelboy with a little help from Grandma) are roasting in the oven (no, we don't eat turkey on Thanksgiving, call me unAmerican if you must :)). Pies are on the counter wafting their scents temptingly toward me. "Stuffing" (which has never actually been stuffed into anything) is cooking in the electric skillet.

In short, it's a typical Thanksgiving day for our family, which finds me reflecting on what I have to be thankful for. There's a lot. I grew up in a wonderful family with two parents who are still happily married after 53 years. I'm married to an amazing man and we have two healthy children together. My physical needs have always been provided for, along with a large number of my wants. I could go on in this manner, but what I really want to reflect on today is what I'm thankful for in the realm of diabetes.

First of all, I'm thankful that insulin was discovered and refined for safe human use. Remember, type 1 diabetes was universally fatal until that time. I'm thankful that scientists continued to develop new insulin formulations and are still doing so. Because of this, diabetics no longer need to "feed their insulin" and eat on strict schedule that adult diabetics today remember from their childhoods. If they choose to, they can eat whenever and whatever they want to eat.

I'm thankful for the many tools available in our time for delivering insulin and monitoring blood sugar. If people need to or choose to use syringes, they have small one-use syringes that measure as little as half a unit. People no longer have to boil their glass syringes and sharpen their needles. Those who use injections can also use insulin pens that deliver a particular amount of insulin with just a twist of a dial. It's not necessary to carry both syringes and a vial and draw up just the right amount. Then, of course there are multiple types of insulin pumps available that deliver insulin in tiny increments at just the push of a button, or in the case of the Tandem pump Kittygirl uses, the touch of a screen. There is even an inhaled insulin on the market.

Speaking of monitoring blood sugar, I'm thankful our family doesn't have to carry around something resembling a chemistry set for measuring with limited accuracy the amount of sugar in Kittygirl's urine. There are blood glucose meters that test blood sugar with just a tiny drop within a few seconds. Even better, Kittygirl wears a sensor that shows a constant graph of her blood sugar so we can always have an eye on how it's moving. She can even decorate the transmitter with a cute dragonfly sticker and hold on the sensor with a blue cat sticker. Plus, she can wear the pump and the phone for her tech in cute custom made pouches.

We have a respected pediatric endocrinology office in our city that's just 20 minutes from our house. When we didn't get along well with the practitioner we were first assigned to, we could easily switch to another one. Our practitioner lets us manage Kittygirl's diabetes in the way we have determined works best for her and for our family and doesn't insist that we manage in exactly the way we were first shown.

Our kid doesn't hate diabetes. She just sees it as one of many factors in her life. She isn't ashamed for her friends to know she has diabetes, and her friends are still happy to invite her to birthday parties and playdates.

I've never been concerned that my child will be in danger at school because the school staff doesn't understand diabetes or doesn't care. I've never had to call an extra meeting because my child's 504 plan isn't being followed. I've never had a teacher who doesn't want my child in their class because of the extra work diabetes can bring.

Finally, I'm thankful for the many amazing people I've met in the diabetes community - locally, online, and through the Friends for Life conference. I never fully appreciated just how generous and supportive people could be until I was introduced to the diabetes community. Kittygirl has said that she doesn't mind having diabetes because otherwise she would never have met one of her friend for life.

If I had been given the opportunity to choose exactly what my life would look like it would not look like this. I wouldn't have chosen diabetes. I also wouldn't have chosen to have two kids six years apart with three losses in between. However, when I sit back to reflect on my life, I'm not really sure the life I would have chosen would have been better. Despite what it can look like on Facebook, no one actually lives an ideal life free from struggles and challenges. All we can do is try to embrace what we have and move forward the best we can within the challenges.

To end, for your viewing pleasure, here's a picture from the back of Kittygirl that she asked me to post. She was riding the horse at Meijer, where we went to buy food for Thanksgiving dinner when we realized she was going to be really hungry if we only had the food we had been planning to serve. Not because of diabetes, but because she's one of the pickiest 8 year olds I've ever known :). You can even see her cute pump pouch making an appearance.

In Which Travel and Diabetes Mix Poorly

Mr. Engineer grew up in Wisconsin. I grew up in Michigan. By a strange twist of fate, we met shortly after moving to Kentucky separately, and that's where we've chosen to stay and raise our children. This is despite the fact that neither of us intended to stay in Kentucky long term.

We love our home, but we don't love the fact that we have no relatives nearby. Since we want to make sure our kids grow up knowing their extended family, and we don't want to break the bank buying plane tickets several times a year, both of our kids had to get used to long drives early in life. 

The good news is, both of our kids have turned out to be pretty good travelers. They've embraced audiobooks, coloring books, and other vehicle friendly activities. Neither child has ever gotten carsick. They did go through a long phase during which we were seriously tempted to leave one or the other by the side of the road because they fought like cats and dogs during every trip, but they've even outgrown that.

However, since February of 2017 we've had an additional travel companion: diabetes. Diabetes has a way of keeping you on your toes when you're traveling. First there's the sheer amount of stuff you have to bring with you, which I covered in yesterday's post. However, the stuff is nothing compared to the blood sugar challenges.

As your activity level changes, you insulin needs change. Normally, Kittygirl's pump settings are modeled after her activity level on a standard school day. We have two additional profiles: one for day camp or other super active days and one for summer, when she's normally more active than during the school year. Sometimes we also turn on one of these during a super active weekend or vacation day during the school year. 

In the case of the camp and summer profiles, Kittygirl needs less insulin because she is more active. In case you don't know, insulin is more effective the more physically active a person is. This is true both of the insulin your body makes and for synthetic insulin like Kittygirl and other people with diabetes use. This is why exercise can be such a powerful part of treatment for people with type 2 diabetes whose bodies are processing insulin inefficiently.

Spoiler alert: when you spend 8-10 hours in a car, it is really difficult for the insulin you take to work effectively. The first few times we took long trips after getting the Dexcom, Kittygirl's blood sugar would go up past 300 the first time she ate something and stay up there for the whole trip.

We're fairly typical Americans when it comes to car snacks. We tend to snack on pretty carb heavy things like crackers, goldfish, chips, etc. For awhile after we discovered how the combination of travel and high carb snacks affected Kittygirl's blood sugar we tried to limit her to summer sausage, berries, and popcorn on trips. However, it didn't feel right to limit Squirrelboy to those things, and it made for an unhappy girl. 

We went back to letting her eat regular car snacks within reason and went back to the drawing board regarding figuring our how to control her blood sugar better within the car. I don't know why it took us so long, but, a few months into getting her insulin pump it occurred to us that we could increase her basal rate while traveling and that might help to keep her blood sugar under control.

We started small with an increase to just 125% and it made a small difference. We slowly upped it until we were doubling her basal for every trip over 2 hours. It has made a huge difference. Mind  you, her blood sugar still isn't perfect on every trip. Today's graph was mediocre. Her blood spiked quite a bit higher than we like to see it several times. However, if I go back in the history and compare it to the Thanksgiving trip of 2018 I can see that things have improved.

Living with diabetes presents challenges in every area of life. Sometimes the challenges are easy to overcome. Sometimes they take a lot of trial and error and you still fail on occasion even when you think you've got it down. Long car trips are our nemesis right now, but I'm told that the might look laughably easy once we start dealing with puberty. We hopefully have at least a couple years before that starts. I'm crossing my fingers for an amazing closed loop system before that time, but I'm sure that even if that happens we'll need to learn how to troubleshoot through the new challenge.

P.S. I chose to focus on car travel here. We've flown once since Kittygirl's diagnosis, but it went really smoothly, so it's not really worthy of comment. Sometime in the next couple years we're hoping to fly to Sweden again (we last went when Kittygirl was 3), so that may merit its very own post.

In Which I Pack for Thanksgiving Travel

Thanksgiving is in two days, and we always travel to my parents' house in Michigan (almost 500 miles away) to celebrate the holiday. We'll leave tomorrow, and my intention was to spend the whole time the kids were in school packing and making sure I had all my ducks in a row for traveling. A small wrench was thrown in my plans when I stopped by Kittygirl's classroom this morning and asked if there was anything quick I could do for her teacher before I left. Long story short, I ended up popping and bagging popcorn for 102 kids - the entire third grade. More on that in another post when it's no longer diabetes awareness month.

I remember back before Squirrelboy was born Mr. Engineer and I could travel for four days and bring two suitcases. For just an overnight or a weekend we might get away with one suitcase. Then after we became parents it felt like we were moving anytime we went anywhere overnight, even for just one night. We'd bring a stroller, we'd bring a pack and play, we'd even bring bottles and formula despite the fact that Squirrelboy was breastfed. Add the huge bag of cloth diapers and a few baby toys and we had quite the haul.

Just as we had begun to pare down our packing when Squirrelboy was in kindergarten, Kittygirl was born and it started all over again. We'd learned a few lessons by then. Kittygirl never really liked the stroller so we stopped bringing it "just in case." It was a whole lot easier to just throw a soft carrier into the trunk. We also drew the line at bringing things like formula that we knew we would actually never use. However, we still brought an awful lot of stuff.

Yet again, we had begun to cut back a bit when what feels like our third child was born - diabetes. Having a child diagnosed with diabetes is like having a newborn in a lot of ways. You're sent home from the hospital with a minimum of instructions and expected figure out how to do all kinds of new stuff and not accidentally kill your kid. There's also a lot of new stuff that enters your world. Instead of diapers, onesies, and breast pumps you're introduced to insulin, glucagon, and test strips.

Diabetes stuff adds an additional bag to our luggage, and I (almost) always pack way more than we're likely to need. Kind of like when I was packing for a newborn, I want to be prepared for every eventuality.

Including two days for travel, we'll be way from home for 5 days. If all goes well with sites and sensors (which is almost always does) we will need to do two site changes, one cartridge change, and no sensor changes while we are gone. We will probably have to treat 2-4 minor lows a day. Because the Dexcom is usually super accurate we may never use a blood glucose meter. If we do, we'll probably use it no more than half a dozen times.

I have packed the following:

2 Dexcom sensors

6 pump sites

6 pump cartridges

10 stickers for going over pump sites/sensors

Scissors to cut said stickers into the cat shapes that Kittygirl insists on

1 bottle Unisolve

Uncounted bag full of alcohol wipes and Unisolve wipes

1 extra glucagon (in addition to the 1 in my purse)

1 extra meter

1 extra insulin pen (just in case the pump fails and the insulin pen in my purse then fails)

2 extra containers test strips

1 container ketone strips

2 large bottles glucose tabs

15 packages fruit snacks

8 juice boxes

Tomorrow just before leaving I will add 1 Basaglar pen and 2 Novolog cartridges in an insulated lunch box with an ice pack.

Yes, it may very well be overkill. Okay, it's totally overkill. Maybe there will come a time when I just throw some amount of supplies that's closer to what we'll really need into a bag. I somehow managed to forget test strips when we traveled for Christmas a couple years ago, though, so now I'm anal about checking off more than we need of everything. Thankfully, after I posted about my need on Facebook a D-mom local to my parents whom I'd never met came to the rescue with a bottle of test strips. I have never yet forgotten insulin, which is the one thing we absolutely positively can't go without. 

Even though my dad comments nearly every time we visit that his grandparents managed to move across the ocean from Europe with only one suitcase, I'd rather be overprepared than underprepared. Maybe this year we'll skip the bag of board games we never play. Then again, maybe not. You never know when a Ticket to Ride emergency might crop up :).

In Which I Review the Story of a Longtime Diabetes Warrior

Disclaimer: I paid for this book with my own funds and have not been reimbursed in any fashion for this review. All opinions are my own.

There are a lot of great books out there about diabetes management. I've reviewed several of them this month. I've also reviewed one book about diabetes parenting and have another in the "to be reviewed" pile. Today's book falls into a third category: It's a memoir of life with diabetes written by a long time diabetes warrior.

Richard Vaughn published Beating the Odds: 64 Years of Diabetes Health in 2009. As of this writing Richard is still alive and has been living with diabetes for 74 years. When he was diagnosed at age 6 in 1945, it was common for diabetes to drastically shorten a person's lifespan. A newly diagnosed 10 year old in 1945 might be expected to live to 45 at the oldest. As his book's title suggests, Richard has beaten the odds.

Richard begins his story with his early childhood. Several years of poor health, beginning with three different types of measles at the age of 2, culminated in his diagnoses with type 1 diabetes (then known as juvenile diabetes). Because doctors knew very little about diabetes at that time, Richard's parents took him to 4 doctors before they got a diagnosis. One doctor prescribed a "tonic" (which was most likely sugar water) to improve appetite. Even the "diabetes expert" who finally gave the diagnosis could do nothing more than prescribe insulin and tell them to avoid giving their son sugar or food that contained a lot of sugar.

Reading about Richard's early life with diabetes made me feel very grateful that my daughter was diagnosed at six in 2017 and not in 1945. There is so much more knowledge about diabetes and so many better options for diabetes management now. Kittygirl is able to do everything her non-diabetic peers do, including playing sports and playing hard at recess. No one at Richard's school was trained to treat low blood sugar, which was an even more serious risk for people with diabetes in the 1940's than it is today because of the way the insulin formulations of the time worked. Richard was not allowed to participate in gym class or to play with his classmates at recess for fear that his blood sugar would go low, resulting in a seizure.

This gem of a book takes us through Richard's life, from a young child with diabetes to an adult who went to college and graduate school and enjoyed a long, successful career as a college math and statistics instructor. Coming from rural Virginia, it would have been an accomplishment for anyone of Richard's generation to finish college, let alone someone with a challenging chronic health condition.

Richard married and has two grown sons and several grandchildren. As diabetes technology has advanced, he has kept up with it and has used the advances to improve his diabetes management. When A1C tests first became available his A1Cs were very high, but he learned all he could about managing his diabetes better and began to work to lower his average blood sugar.

In addition to having written the book, Richard has been an active member of the diabetes online community (DOC) since 2006. In fact, it was members of the DOC who encouraged him to write a book expanding on blog posts he had written about his early life with diabetes

Richard is very active in a variety of diabetes Facebook groups, and regularly share stories from his life to encourage the parents of children with diabetes. His life reminds us that, if he could live a long, happy, and relatively healthy life with diabetes despite all the odds stacked against him, the chances are even better for our children.

Whether you have diabetes, your child has diabetes, or you're simply interested in a a fascinating personal narrative about how the treatment of the disease has changed since the mid 20th century, I highly recommend this book.

In Which I Realize That I Actually CAN Let Kittygirl Out of My Sight

Kittygirl was diagnosed with T1D just a few weeks after her 6th birthday. She had quite recently reached the age at which I was beginning to regularly leave her at playdates and birthday parties, and she had even begun to ask about sleepovers. When I was told that she would need to have a shot every time she ate anything and her blood sugar would need to be checked regularly, especially when she was playing actively, I was afraid I'd never be able to leave her alone again.

I was terrified to send her back to school (which happened just three days after diagnosis) because something might go horribly wrong. Despite the fact that, at that point in time, her teachers had had almost as much diabetes education as I had, I presumed I was better because I was her mom.

She survived the her first day of school after diagnosis, of course, and her care at school has always been great. Until she got an insulin pump, however, I still attended every playdate and birthday party. I wasn't comfortable asking other parents to give Kittygirl a shot. 

After Kittygirl got her pump, a mom at soccer asked if I was comfortable having her come to their house for a playdate. I nervously agreed, and proceeded to give the mom a 15 minute mini training session when she picked up Kittygirl. Everything went fine.

That winter, Kittygirl was invited to a birthday party. I had still been staying at every party, but, in the second semester of 1st grade, I had become unusual. First graders are normally dropped off at parties, at least around here. Kittygirl begged to be dropped off. I nervously asked the mom of the the birthday girl if she was comfortable texting me a picture of the food before Kittygirl ate and entering the number of carbs I gave her into the pump. I gave her a demonstration of how to use the pump. She was happy to help, and I walked out the door.

I was nervous enough that I didn't choose to go far. I parked myself at public library branch just 10 minutes from the birthday girl's house. I looked at Kittygirl's Dexcom graph about every 10 minutes to make sure she wasn't going low, despite the fact that I had alarms set to notify me earlier than the alarm on her phone would beep. Everything worked out fine, and I realized that, with friends with parents willing to learn, it really was acceptable to leave my T1D child at a party.

As time has gone on, I've gotten more and more confident leaving Kittygirl at playdates and parties. All the parents of her friends have been incredibly helpful and willing to learn. I realized we're blessed in that way. I've heard plenty of stories of kids who are excluded from parties and playdates because of their T1D.

We've entered new territory this year. The day camp Kittygirl has attended for two summers now is held at a local private school. I was nervous approaching them about accepting a child with T1D the first year, but they were totally open to it and willing to let me and Mr. Engineer train their staff. The school encourages kids to be independent in their own care (normally this is things like putting on their coats and tying their shoes) and they encouraged us to push Kittygirl into the first steps of independence in diabetes care. That camp was the first time (the summer after first grade) that Kittygirl tested her own blood sugar. This past summer (after second grade) we agreed we'd test out the idea of Kittygirl using her pump there with adult supervision. Since that worked well, we continued the practice this school year.

Kittygirl asked for even more independence when she begged to sign up for the Girls on the Run afterschool program. It's run by college age volunteers. I met with her main coach half an hour before the first session and gave her a brief rundown on diabetes, but Kittygirl has mostly been on her own dosing insulin for snacks and treating lows. It has not always gone well. You can read the post in which I reduce Kittygirl to tears to learn more. However, overall I've seen Kittygirl take some big steps.

Yesterday was the last session of Girls on the Run before the 5k this weekend. Unbeknownst to me, they had a Christmas party, and most of the food was not labeled for carb count. Instead of asking a coach to text me, Kittygirl looked at her plate and estimated the carbs on it. She nailed it. Her blood sugar never went above 124. I was amazed and proud when I found out.

Mind you, Kittygirl, who will turn nine in 2 months and 2 days, is far from fully independent in her diabetes care. She uses her pump and treats low on her own when we're not with her, but we do everything (and I do mean everything, including taking the pump out of the pouch) when she's with us. She is not ready to help change her pump sites or CGM sensors. In fact, she currently has no interest in learning. 

She's also quite a ways away from nighttime independence. It's a rare night that her blood sugar doesn't go low or high, and I still have never let her have a sleepover away from us. I've reached the point where I might consider it with a parent I know well who was willing to keep their phone on and all night and possibly get a call or a text. In fact, there was even a sleepover planned this summer but Kittygirl backed out at the last minute. Slumber parties, on the other hand, are a bridge I'm not yet willing to cross. I'm sure I'll get there, given how far I've come from the day Kittygirl was diagnosed, but I'm nervous about putting another parent on the spot to treat overnight highs or lows while dealing with all the other chaos that a slumber party entails.

The one thing I've never been really nervous about letting Kittygirl do, with or without diabetes, is climbing up to high places. She's an excellent climber, and she's also good at knowing how high she can climb and still get down safely. She has often gone so high in trees and on playground equipment that she makes other parents nervous.

I think this is a good analogy to giving your T1D child gradual independence. Of course you're not going to leave your newly diagnosed 3 year old at a party, just like you're not going to let any 3 year old climb to the top of a tree. However, as your child gets older, it's appropriate to give them more independence as they show readiness for it. 

Just like with climbing, this will look different for different kids. Some kids are giving themselves shots with adult supervision at 6. Others are still asking for help at 14. Some kids are climbing to the top of the monkey bars at 5, while others are having a hard time just crossing them at 8. 

I'm in favor of following the child's lead for the most part when it comes to independence in diabetes care. I think it's fine (and sometimes even advisable) to suggest the child try a new task (testing blood sugar, giving a shot, using their pump, etc), but I don't think it's a good idea to push. Even if you see 50 posts today on that diabetes parent Facebook group of 4 year olds testing their own blood sugar, it's really okay if you still do it for your 8 year old. 

My one caution (based on the experiences of others, not my own) is to avoid pushing all diabetes tasks on your child from an early age, even if they seem ready. This is likely to produce diabetes burnout sometime during adolescence. So far, I really like the balance we have of a lot of independence when Kittygirl is away from us and us totally taking over when we're together. Only time will tell if the balance we've achieved now will work out well long term.

In Which I Learn Not to Fear Low Blood Sugar

Despite the scientific fact that a person with diabetes is statistically more likely to die due or experience severe brain damage due to DKA brought on by extended high blood sugar that produces ketones, it seems that the biggest fear of some adults with diabetes and even more parents of children with diabetes is a severe low blood sugar resulting in seizure and brain damage or death.

Before I continue and further provoke the fears of someone reading this who is dealing with a new diagnosis, I want to make it clear that, though both scenarios do happen, they are both statistically rare. It's actually much more likely that a person will die of DKA because their new onset diabetes is incorrectly diagnosed or not diagnosed at all. Once you're diagnosed and getting proper treatment, your risk goes way down. That is, of course, presuming you're able to get ahold of enough insulin for your needs (a serious problem that needs a whole other post to address it).

When Kittygirl was first diagnosed she could not feel either high or low blood sugar. Her doctor assured us that this would happen with time. However, even three months in when we got the Dexcom CGM Kittygirl did not show any symptoms when she had low blood sugar.

Some people argue that kids like her will eventually learn to recognize their body's symptoms of high and low blood sugar if parents don't use the CGM as a crutch. However, we've tried all kinds of tips and tricks, and, while Kittygirl does feel something now, her feelings are very subtle and easily missed. When her blood sugar drops under 70 she starts to feel hungry (easy to miss if it's near mealtime anyway) and when it rises over 200 she starts to feel thirsty (again easy to miss, especially if it's a hot summer day). The classic feelings of weakness, headache, irritability, nausea, crankiness, etc, are so far just absent for her.

You would think that, since my child's symptoms of low blood sugar are so mild I would not be worried about it. However, initially, her lack of awareness made me feel even more worried. I practically carried a trick or treat bucket worth of low treatments around with me, and, once we got the Dexcom, had Kittygirl eat something when her blood sugar started to trend below 150.

Mr. Engineer tried to gently point out that 100-150 was still a very safe blood sugar range and that, if we wanted Kittygirl's blood sugar to be closer to normal, I had to get comfortable letting it get below 150. Ironically, one incident that caused me to lighten up a bit was a very low blood sugar that occurred at a park.

Mr. Engineer and Kittygirl were headed to a park and Kittygirl wanted a snack first. I gave her insulin for the snack and then proceeded to forget to give her the snack. They blithely went on their way, Kittygirl having forgotten about the snack. As Kittygirl played Mr. Engineer watched the dots on the Dexcom drop more and more steeply. He stopped Kittygirl from playing and gave her a juicebox, but the drop continued until the Dexcom just read LOW. Measured with the meter, Kittygirl's blood sugar was 26.

Via phone, Mr. Engineer consulted with me and we tracked down the source of the low blood sugar to the uneaten snack. I told him how many carbs Kittygirl should have had. She ate them, and then impatiently waited until her blood sugar was back in range. Kittygirl felt totally fine the whole time.

The experience was stressful for Mr. Engineer, but, for me, it served as a wakeup call that, if Kittygirl could feel totally fine with a blood sugar of 26 and it could be handled with food and a short rest, it really was okay to let her blood sugar drop to 100 or even 80 in the course of a normal day.

I still stock a lot of low snacks at my house (see the above picture) and carry more with me for a short outing than I'm likely to need over the course of a week. However, I've stopped being afraid that a low blood sugar is going to be a huge disaster. Sometimes, thanks to Dexcom, I'm able to head off a low blood sugar before it gets below 70. Other times this fails miserably or I don't catch it in time, but Kittygirl eats something and she's totally fine. I've learned that, most of the time, hypoglycemia is not the emergency I feared it would be.

Now, just like with everything else on this blog, I can only speak from my own experience. I know there are people with really severe reactions to low blood sugar. I imagine that, for an adult living alone, the idea of having a low blood sugar that they can't treat independently is terrifying.

I'm not saying that low blood sugar is never a big deal for anyone. What I AM saying is that we shouldn't be so afraid of low blood sugar that we run our (or our child's) blood sugar relatively high all the time to avoid it.

In Which I Review Two Books I Thought I Never Wanted to Read

Disclaimer: I paid for these books with my own funds and have not been reimbursed for this review in any fashion. All opinions are my own.

When it comes to what you should eat, people in the diabetes community fall into two broad categories. There are the "eat whatever you want as long as you cover it with insulin" people and there are the "eat only low carb food" people. Of course, I know not everyone fits neatly into one category or another, but most people are closer to one end of the spectrum than the other. We're thoughtful about what Kittygirl eats and strive for a balanced diet and carb moderation, but she doesn't eat low carb by anyone's definition so we're much closer to the "eat anything you want" end of the spectrum than we are to the "eat only low carb" end.

Yesterday I reviewed a book that advocates eating limited carbs, which the author defines as no more than 30 carbs per meal. The two books I'm reviewing today make that advice look exceptionally permissive, since the diet advocated in the books allows for about 30 slow acting carbs per day (mostly in the form of vegetables).

Low carb eating has suddenly become all the rage in the U.S., not even taking the diabetes community into consideration. The first low carb diet I remember being widely publicized was the Adkins diet. Now Paleo and Keto diets are on the upsurge. Chances are you know at least one person who follows each of these diets.

However, the true grandfather of low carb eating as it relates to diabetes is Dr. Richard Bernstein. Dr. Bernstein developed a low carbohydrate diet to improve own diabetes health in 1970 (nearly 50 years ago now) and has since been doing everything he can to spread the word and help others achieve normal blood glucose control with the help of diet. I purchased the 4th edition of his  bestselling tome The Diabetes Solution, which was published in 2011. As far as I can tell, this is the latest edition as of now. In order to cover all the bases I also purchased The Diabetes Diet, which was published in 2005.

When Kittygirl was first diagnosed I settled myself firmly in the "eat whatever you want as long as you take insulin for it" camp and determined that I never needed to read these books because I didn't believe a low carb diet was necessary and I was annoyed by anyone who even brought up the subject.

However, as time has gone on, I've realized that having some low carb options in my diabetes toolbox is exceptionally useful. I've also come to the realization that eating low carb really is the best solution for some diabetics, especially for adults with type 2 who want to avoid stressing their beta cells to the point that they need to start taking insulin.

Dr. Bernstein begins both of his books by sharing his story. He was diagnosed with diabetes in 1946 at the age of 12. After 20 years of following the recommended high carb low fat diet, he was in his early 30's and suffering from serious complications of diabetes. As a father of young children, he decided he needed to figure out if there was something he could do to improve his health and live to see his children grow up.

He purchased the first available blood glucose meter, which was actually intended only for clinical use at the time (he was able to get a workaround by having his wife, a physician, order it for him). He began regularly testing his blood sugar and a arrived at a diet that enabled him to take only small doses of insulin and keep his blood sugar close to a nondiabetic target level (mid 80's) most of the time.  He published a paper about his findings, which was resoundingly ignored.

At the time he developed the diet Dr. Bernstein was an engineer, not a doctor. Based both on my experience with Mr. Engineer and on passages from the book, I think his engineering training contributed a lot to his ability to systematically test and develop the diet. However, since the medical community was ignoring him he decided "if you can't beat them, join them" and went to medical school in his 40's. He then opened a private diabetes practice in New York.

Dr. Bernstein's diet is strictly regimented, indicating a very specific number of carbohydrates and amount of protein per meal. As a rule, he advocates against snacks, though there a few foods he allows as an occasional snack because they appear to have no effect on blood sugar.

It's tempting to look at Dr. Bernstein a a killjoy. However, now that I have read his books and know his story and the stories of some of the people with diabetes he has helped, I understand that he's really a pretty amazing person who wants all people with diabetes to live their best lives possible.

As of the release of the 4th edition of The Diabetes Solution in 2011, all of Dr. Bernstein's diabetes complications had been reversed, even some he thought were irreversible. His blood work results were generally not just those of a nondiabetic, but those of an extremely healthy elite athlete without diabetes. He has worked with many patients who had lost hope that they could ever have normal blood sugars. His office has treated both type 1 and type 2 diabetics, as well as patients who are obese and have begun to experience insulin resistance but are not officially diabetic. Though he is now in his 80's, Dr. Bernstein still offers regular free video seminars to people who want to understand his methods.

If what you're looking for is a deep dive into what causes abnormal blood sugars in diabetes, what effect they can have on your health, and exactly what you can do about it, The Diabetes Solution is the book for you. It's a huge tome and full of detail. It contains a lot of technical terms and was difficult for me to get through at times, but it could ultimately be very worthwhile for the right reader.

What if you want an introduction to Dr. Bernstein's methodology but aren't ready to dive into a huge, technical book? Then I recommend starting with The Diabetes Diet. This books is aimed at a general audience as opposed to the diabetes community in particular. In this book, Dr. Bernstein advocates his diet as the only solution for people with diabetes and the best diet for optimal health for everyone else.

The first part of the book is basically a summary of The Diabetes Solution in simpler terms, including references to that book for readers who want more detailed info. The second part is a series of recipes, most of which were developed by a professional chef whose son has type 1 diabetes. The Diabetes Solution also contains a recipe section, but it is not as expansive as the one in The Diabetes Diet.

Ultimately, while I'm glad these books exist and I appreciate the fact that Dr. Bernstein and his diet have helped countless diabetics, I don't accept Dr. Bernstein's solution as the only solution out there that can give a diabetic normal blood sugars. Once upon a time that was true, but, thanks to CGM and new types of insulin, it's possible to sugar surf your way to a nearly flat blood glucose graph. As more and more closed loop systems come to market, it will become possible even for those who don't want to sugar surf or don't understand it to keep their blood glucose in range the large majority of the time.

If you feel like the tools and options offered to you as an adult diabetic or the parent of a diabetic aren't cutting it, and  you're willing to do anything necessary to achieve normal blood sugars for yourself or your child, I highly recommend getting ahold of one or both of these books. Despite popular wisdom that "kids need carbs to grow," there are plenty of children thriving on a low carb diet. I wouldn't recommend putting just your child with diabetes on this diet, but, if the whole family is willing to make the changes, it could be a positive move for the health not only of your child but of your whole family.

Though I don't foresee our family ever embracing the Bernstein diet, I'm glad it's out there as an option. I also really appreciate that, unlike many of the recent low carb diet crazes (keto slimfast shakes anyone?) it offers guidelines in which to eat any of a huge variety of foods and does not market its own packaged foods. I actually tried a couple of the recipes myself and they're quite tasty. The "easy breakfast omelet" in particular may even become a staple of mine. However, I know my kid and I know that trying to drastically switch her diet, even if the whole family switched, would cause nothing but conflict. She already eats a different meal from the rest of the family at least 60% of the time, and, yes, I've tried all the picky eater tips out there with no success.

In Which I Review a Book with Valuable Advice That I Sometimes Halfway Follow

Disclaimer: I purchased this book with my own funds and have not in any fashion been reimbursed for this review. All opinions are my own.

Because Mr. Engineer and I are consummate researchers, we scoured Amazon for diabetes books after Kittygirl was diagnosed. I've already reviewed two of the gems we found that had a huge effect on how we've chosen to manage Kittygirl's condition. Today I'll review a third, which is well written and contains a lot of good advice, most of which we don't really follow, for one reason or another.

Adam Brown was diagnosed with type 1 diabetes as a teenager. He was told that he didn't need to change anything about his diet as long as he took insulin for everything he ate, and he continued his high carb eating lifestyle into young adulthood.

This lifestyle caused him to have huge blood sugar swings, from lows of 45 all the way up to highs in the 300's. Though he didn't like this, he doesn't blame his mother or the medical practitioners who treated him back in 2001. He views them as all being victims of a lack of knowledge.

In 2010 three things changed in Adam's life, which eventually compelled him to write his book Bright Spots and Landmines: The Diabetes Guide I Wish Someone Had Handed Me. First, he learned about nutrition and moderating carbs to reduce blood sugar swings. Second, he became involve in the diabetes community, including writing a column for Diatribe, which published his book. Third, he began using a CGM which opened a window into how everything in his life affected his blood sugar. The final result was his book, which was released in 2017.

Adam does not have a medical degree, diabetes related or otherwise, and does not write as if he does. He speaks as a person living with diabetes speaking to other people living with diabetes. His book is aimed at everyone living with diabetes, not just those with type 1 or who are otherwise insulin dependent. In fact, though I don't have diabetes myself, I found some of his advice actionable in my own life as I strive to eat healthier, be more active, and lose weight.

The book begins with an introduction in which Adam shares his story and the methodology behind his book, continues with four sections (on food, mindset, exercise, and sleep), and ends with a section tying it all together.

In each section Adam shares his diabetes bright spots (that is, things he has learned to do right and wants to replicate as often as possible) and landmines (that is, mistakes that push his blood sugar out of range or otherwise make his life difficult). He includes specific details. According to the book, each bright spot or landmine must be "Specific and Actionable", "Realistic and Sustainable", and "In My Control and Attainable."

In addition to specific examples of bright spots and landmines from his personal experience, Adam ends each chapter with a series of questions for readers to ask themselves. The purpose of these questions is to help readers find their own bright spots and landmines.

Though Adam advocates pretty low carb eating (no more than 30 carbs at one sitting), he doesn't position himself as the low carb police as some in the diabetes community do, and he doesn't advocate a particular diet. What he does do is give specific examples of things he eats which raise his blood sugar slowly and not very high as well as suggestions of small changes readers can make to eat in a way that will keep their blood sugar in range and make them feel healthier and happier. He even shares his CGM graphs after eating meals and snacks he suggests.

The section on exercise is pretty straightforward. It's not secret that exercise lowers insulin resistance and that sometimes exercise alone is enough to start your blood sugar in a downward direction. Again in this chapter, Adam gives tips about how to stay active despite a busy lifestyle. One of his favorite tips of mine was to adopt a dog, which will compel you to take it for walks and thus stay active. Somehow, even that wasn't enough for me to convince Mr. Engineer to get a dog, however :).

The sections on mindset and sleep are the most groundbreaking.  As I've discovered even as a diabetes parent, having the right mindset is a big part of the battle when it comes to living well with diabetes. We need to remember that blood sugar values are data to work with, not "good" or "bad", and we need to focus on how our choices affect those around us as well as reaching out to our community (in the diabetes world and out of it) for support. However, none of these things are normally covered with newly diagnosed diabetics or the parents of newly diagnosed children.

The section of sleep cities studies that at least 7 hours of sleep every night leads to lower average blood sugar. It gives advice on things such as what to eat for dinner and when to eat it to best avoid overnight high and lows. It also advises the best way to treat overnight lows to avoid overeating, which is a common problem especially among adults with diabetes living alone. It even addresses the fear of overnight lows, and how to address them without overeating before bed and causing overnight highs.

Ultimately, I found this book to be well-written and a quick and easy but not truly light read. Adam's advice has helped us with Kittygirl in a few ways. We make more conscious choices in what we feed her and have moderated her carbohydrate consumption (though not to the point recommended in the book). We do our best to give her lots of opportunity to be active and try to our best to allow her enough sleep at night. Attitude is still a growth area for us. All too often I still refer to out of range blood sugar as bad.  However, I'm working on it and have improved quite a bit since the beginning.

However, we haven't fully applied all of Adam's suggestions. This is partly because of Kittygirl's picky and stubborn eating habits. We manage to keep her meals under 30 carbs sometimes, but she's not willing to eat meat or cheese, berries, and peas for every meal, quite understandably. Sometimes it's simply not possible to follow Adam's advice, particularly regarding low carb eating, with our particular kid and end up with a happy kid who doesn't hate her parents or diabetes.

Even if you ultimately don't follow all of the advice in this book, I still recommend checking it out. Just following the book's suggestions here and there and looking for your own bright spots and landmines in the four areas could make a big difference in your or your child's diabetes management.

In Which "Big Pharma" Is Not Keeping a Cure Under Wraps So They Can Make the Big Bucks

Until Sir Frederick Banting and his colleagues Charles Best and Dr. J.J.R. Macloed refined insulin from the pancreases of dogs and injected it into the first human patient in 1922, type 1 diabetes was universally fatal. This was less than 100 years ago. The first recorded incidence of diabetes occurred in Ancient Egypt in 2550, more than 3000 years ago.  Presumably it was present in the human population even earlier. I like to keep these things in perspective when people in the diabetes community lament the lack of a cure "after so much time."

To be fair, no one told us when Kittygirl was diagnosed that we were lucky because a cure was just 5-10 years away. Apparently many newly diagnosed diabetics have been hearing this since at least the 1970's. In fact, when Kittygirl was diagnosed I didn't even know there was promising cure research happening.

My hypothesis is that, with the technology we have available now and the research happening around the world, there will very likely be a cure and/or a revolutionary treatment that ends insulin dependence for type 1 diabetics within Kittygirl's lifetime. However, scientific research is slow and ponderous with a lot of stops and starts. I imagine it will be at least 10 years before anything resembling a cure is on the scene, possibly closer to 20 years or even longer.

In the meantime, I eagerly follow the advances in diabetes technology that are relatively quickly moving toward a true closed loop system with an insulin pump and a CGM. Such a system would not be a cure, but having normalized blood sugars with a small amount of work would be the next best thing as far as I'm concerned.

Just within the United States I know of several scientific teams that are experimenting with different types of pancreatic beta cell implantation. This has actually led to some human subjects achieving remission of their type 1 diabetes and becoming insulin independent. However, it comes at the cost of a lifetime of anti-rejection meds, which have their own potentially dire side effects. Partly for this reason, there are currently no pediatric trials of this procedure as far as I know.

There's a team of scientists at City of Hope in California who are looking for an immunological cure. According to an interview I heard with the director, their hypothesis is that the cure might look slightly different for everyone. They did achieve insulin independence for one subject. It only lasted a few years, but even a few years free of the burden of diabetes sounds pretty amazing.

At Faustman Lab in Massachusetts, Dr. Denise Faustman is pursuing a unique line of research, using a cheap and widely available tuberculosis vaccine in an attempt to rewire the immune system. So far, her research has resulted in her subjects being able to achieve a lower A1C with less work but it has not yet resulted in insulin independence. However, it is only in phase 2 of testing. If this research pans out, the treatment might be effective for many or even all autoimmune diseases, which would be a medical research coup to top all coups. No autoimmune disease has ever been cured.

About a year ago I read an article about a team of researchers in Indianapolis who were injecting beta cells under the skin of dogs with naturally occurring diabetes (this is noteworthy because in most animal research the animals are made diabetic) which has resulted in three months of insulin independence. I haven't seen any follow ups on this research so I don't know if it's gotten any further.

This is just research in the United States. I don't know much about it, but I know that there is cure research going on around the world. Sometimes people in the diabetes community look at all the research and ask themselves and others why none of it has yet resulted in a cure. They hypothesize that "big pharma" will never allow a cure to come to market because they're making too much money keeping people insulin dependent for life.

I think this attitude is flawed for several reasons. First of all, the fact is that the majority of industrialized nations around the world have government funded universal healthcare. It would be significantly cheaper in these countries for those who have diabetes now and those diagnosed in the future to be cured right away than to be treated for the rest of their lives. Even if a cure were discovered in the U.S. and there was pressure not to make it available here, I have faith that the scientists would get it on the market elsewhere and word would spread. In such a scenario I believe there would be such an outcry that it would eventually have to become available in the U.S. as well.

Secondly, this attitude ignores the fact that scientific research almost never moves in a straight line. Scientists had begun to understand that diabetes was a disorder of the pancreas in the mid 1800's. The islets of Langerhans, the part of the pancreas that produces insulin, were named for the scientist who discovered them in 1869. A variety of scientists had tried to isolate the pancreatic secretion that controlled blood sugar (with limited success) as early as the 1880's.

Dr. Banting, who was surprisingly ignorant given what a huge impact his work had on medical history, did not know about these previous studies when he proposed his own. It's a good thing he didn't, because he said later that, if he had, he would probably not have begun his ultimately successful work.

In the 21st century, it's nearly impossible for one scientist to be unaware of the work of another scientist in their field. It's quite possible that a cure will eventually come from a diverse interdisciplinary team of scientists working separately but in tandem around the world. It's possible that one of the projects currently underway will succeed and provide a cure for all or most diabetics.
It's also possible that all the current research will eventually fail, but will serve as inspiration for an up and coming gen Z scientist who discovers a cure in 20 years.

Even if it takes another 50 or even 500 years for a cure to be discovered, the span of time between the discovery of a lifesaving treatment for diabetes and a cure for diabetes will have been relatively short when looked at within the whole span of human history.

I hope and pray for a cure within Kittygirl's lifetime. I would love for her to be relieved of the burden of taking care of her diabetes for her entire adulthood. However, even if that doesn't happen, I'll remain grateful for the research toward that goal and for the technology that can hold us over until it is reached.

In Which I Review the Book I Wish Someone Could Have Handed Me 2 1/2 Years Ago

Disclaimer: I purchased this book with my own funds. The opinions are my own and I have not been reimbursed in any fashion for this review.

The world of Diabetes books has just gained a wonderful new addition. The World's Worst Diabetes Mom by Stacey Simms, host of the well-loved Diabetes Connections podcast, was released in October through her website and became available on Amazon this month. It is currently available in paperback and kindle editions, and an audiobook will be released in the future.

Stacey is the mother of Benny, who was diagnosed with type 1 diabetes at 23 months and is now almost 15. She has been living in the D-parent world for a long time, and she is ready to share many of her experiences, both good and bad, with us through her book.

I wish this book had already been written 33 months ago when my daughter was diagnosed and someone had handed me a copy. In addition to Think Like a Pancreas, which is still my favorite book for understanding what it means to have diabetes, this is going to be the go-to book that I recommend to parents whose children are recently diagnosed with diabetes. For parents who are afraid that they will never be able to live a normal, happy life again, this book can serve both as a comfort and as a breath of fresh air.

Stacey's mantra regarding her son's life with diabetes is, "not perfect, but safe and happy". She shares stories of her family's successes and failures, including the time they realized Benny's pump site was blocked by sand after going immediately from a day at the beach to dinner at a restaurant.

Beginning with the story of Benny's diagnosis, each chapter details an aspect of their family's life with diabetes and connects it to parenting any child with diabetes. Some examples are "Life Goes On", "School Skills", "Brothers and Sisters", "The Backup Plan", and "Summer Camp".

In case the honest, helpful text in each chapter isn't enough, every chapter also ends with a series of questions that you can ask your doctor to give you an even greater understanding of the topic at hand.

Stacey's writing style makes you feel like you're sitting down with her over a cup of coffee and chatting about raising a child with diabetes. Even though she has a wealth of experience to offer, she doesn't present herself as an expert, just as a mom who is a little further along in her journey and wants to bring others along with her.

When Kittygirl was diagnosed, we were blessed to already know a few D-parents who were raising healthy, happy kids as well as a few adults with T1D. This was a huge help to get us over the initial fear that our lives would be ruined and our kid would never be healthy and happy. However not everyone has those connections. In fact, I would venture to say that most people don't have those connections. In those situations, this book would be invaluable.

Whether your child was diagnosed 14 days ago or 14 years ago, I think this book has something for you. I'd venture to say even many adults with diabetes could relate to it and even learn a few things. I'm so glad Stacey decided to contribute to the wide world of diabetes books.

In Which It Is World Diabetes Day, and Diabetes Wants to Make Sure I Don't Forget It

Today is World Diabetes Day. The date was chosen to commemorate the birthday of Dr. Frederick Banting, a physician and scientist from Canada who led the team that discovered and refined insulin in 1921. Before that, type 1 diabetes was inevitably a death sentence. A few revolutionary doctors were keeping patients alive for months and sometimes even a few years on a near starvation diet. The only such patients who didn't eventually starve to death were those who were kept alive through this treatment long enough to benefit from the discovery of insulin.

Nearly three years into diabetes, it most often feels like a routine to us. There are days when we do everything right and Kittygirl's blood sugar stays in range all the time or only goes slightly out of range a handful of times.

However, there are still plenty of times when we really have no idea what we're doing and we make the same kinds of mistakes we made early on. One of those mistakes happened this morning.

Kittygirl and Mr. Engineer went to a fun event at her school last night that included a bake sale. They brought home some sugar cookies made by a mom who has her own cottage bakery and whose cookies are amazing. Due to me making another mistake yesterday afternoon in dosing a cookie for a birthday treat at Girl Scouts, Kittygirl's blood sugar had been high for most of the afternoon and was just coming back into range when the cookie was purchased. We told her she'd have to wait until today to eat it.

I'm not quite sure why I agreed to this, but Kittygirl somehow negotiated having the cookie with breakfast, instead of one of the two pieces of toast she most often has. She also always has fruit and sausage, in case you're aghast at that lack of balance in a breakfast consisting of two pieces of toast :).

I know exactly how to dose insulin for toast. If there are no other mitigating factors, I can keep Kittygirl's blood sugar in range with her typical breakfast. I thought I could do it with the cookie as well, but I was wrong.

By the time I dropped her off at school, Kittygirl's blood sugar was nearly 300. I gave her a little extra insulin, and she was back in range within an hour. It wasn't a disaster, but it was really annoying. I'm not a fan of these little reminders diabetes gives me that my skills are not equal to those of a pancreas, and in fact that often they're really pathetic in comparison.

We realized when we got to school that Kittygirl forgot the shoes she needed for Girls on the Run this afternoon, so I decided to come in for lunch and bring the shoes with me. I was glad I did, because, as she opened her container of goldfish crackers, Kittygirl managed to knock it off the table and spill all the crackers onto the floor.

Because she gets insulin for lunch beforehand, Kittygirl needed to replace the 20 carbs that the goldfish represented. If all else failed she could have done it with fast acting sugars from her supply bag, but that would be less than ideal. I scanned the lunch tray of the friend who was eating with us and calculated that her roll was about 20 carbs.

I took Kittygirl with me into the hot lunch line, explained the situation to the supervisor, and asked if we could have a roll. He graciously gave us one and the situation was saved. I'm not sure what Kittygirl would have done if I hadn't been there and she had spilled her goldfish. We need to have a conversation about how to problem solve in such a situation after she gets home.

I'm always aware of diabetes, of course. Even when everything is going well, diabetes is constant background noise in our lives. However, there are times, like the two situations today, when diabetes makes me extra aware.

In Which I Realize That Yesterday's Post Was Inconsistent

I received a little blowback about yesterday's post, in which I first stated that we shouldn't judge ourselves or others by an A1C and then proceeded to share generalities about how great my daughter's A1C is. Maybe it's because I wanted to finish the post quickly due to afternoon obligations and didn't spend much time rereading my post before publishing it, or maybe it's just because I'm a human being who makes mistakes, but it somehow did not occur to me that these two things were somewhat contradictory.

I still think the post, especially the first five paragraphs, has value, so I've left it up. However, I wanted to elaborate today on what I was really trying to say.

The A1C is a data point that gives a snapshot of your/your child's blood sugar control over the past 2-4 months. It can give you and your medical team an idea of what to do next. However, it has no bearing on your value as a person or as a parent.

Yes, there are actions you can take that increase the likelihood of a lower A1C. The dynamic management style subscribed in Sugar Surfing is one. Following a lower carb diet is another. However, no matter what methods you are using or are not using, managing diabetes is hard and there will always be a ton of factors affecting a person's blood sugar control, many of which are outside of your direct control.

If your child is starting puberty or going through a growth spurt, blood sugar can be particularly hard to control. There's no reason to beat yourself over the head if your child's A1C goes up in such a situation. It's simply a data point that shows you're still learning how to navigate within the new parameters.

Yes, it's true that many, many years of high blood sugar, indicated by high A1Cs, can lead to diabetes complications. Here's the thing, though. One high blood sugar, one high A1C, or even years of high A1Cs will not inevitably turn on the "diabetes complications" switch. There are a ton of factors, not all of which are well understood.

Both my father and my father in law have type 2 diabetes, and they've had it for similar lengths of time. My father in law is more careful about what he eats and has often had lower A1Cs. However, my father currently does not suffer from any complications and my father in law does. Diabetes doesn't play fair.

The good news is, there are treatments now available or being developed that can mitigate some of the complications of diabetes. Plus, there is data showing that good blood sugar control can halt and sometimes even reverse complications that have already started. All hope is not lost, even if years of high A1Cs and judgment for them have made you feel like a bad diabetic or a bad D-parent.

One of the reasons I left a Facebook group I used to belong to that advocated (with well-meaning intent) for tight blood sugar control, was the disregard so many members of the group had for the fact that diabetes is different for everyone and that the tight control they had on their child's blood sugar might be more difficult for someone else. I also got tired of reading statements like, "I keep such tight control because I want my daughter to keep her pretty little toes." The implication being that, if you don't consistently have tight control of your child's blood sugar, they will inevitably lose a limb in adulthood.

Here are some final thoughts on A1C and on sharing that data. In the beginning of our diabetes journey I shared a couple A1Cs on my Facebook feed. I decided later on that that was inappropriate in large part because it's not my data to share. While Kittygirl is fine at this point with me sharing about her diabetes, there's no good reason for me to create a digital cache of her private medical data.

This is different for adults with diabetes. If it's helpful to you to publicly share info about your A1C, either because you've been working hard and you want to brag, or because you've been struggling and you want to ask for help or just to get validation that you're not alone, share away. It's your own data, and it's your choice whether you want to share it.

Personally, I have chosen to only share actual data about Kittygirl's diabetes in personal conversation with a very limited number of people. If Kittygirl at some point in the future no longer gives me permission to do even that, I will stop.

I've read through this post a couple times now, and I'm pretty sure there are no contradictions, but I'd love to know what others think about this issue.

For your viewing pleasure, here's a pic of Kittygirl enjoying the snow we got yesterday - without a jacket and with her diabetes supply bag in view. She doesn't even know what her latest A1C was, and she doesn't care.

In Which My Daughter's A1C Is Not a Grade

Kittygirl had her quarterly visit at the endocrinologist office yesterday. She actually doesn't see a doctor, but rather a nurse practitioner within the practice with an endocrinology specialty. We had a personality clash with the doctor to whom we were initially assigned (purely because she was on call when Kittygirl was in the hospital), and a local friend recommended the nurse practitioner, whom we love.

Because I can't post a picture of Kittygirl, I'm sharing a picture of the book she was reading during the appointment. As you may remember from previous posts, I have been frustrated by the fact that, while she reads very well, she only chooses to read if a book catches her eye and most of those books are graphic novels. She picked up this little book at a Little Free Library box near her school (these are great, google them if you don't have them in your town) and literally refused to put it down from that point on. We had to pull it out of her hands so she could be weighed and talk to the nurses.

Anyway, based on my completely unscientific research consisting in the reading of blogs and Facebook posts, it seems as if a lot of adult T1Ds and parents of young T1Ds dread every endocrinologist visit. Many people feel judged by their endocrinologist if their blood sugar results aren't meeting the goals that their doctor has set.

This is a tragedy. Of course, it's best for a type 1 diabetic's A1C to be as low as possible without significant incidence of low blood sugar, and it's important for those using CGMs to continue to increase their time in range. However, it's never right for a medical practitioner to make patients or the parents of juvenile patients feel bad if they're not meeting these goals. The A1C and time and range are data points. If they're not where they should be, that's a call for the doctor and patient to work together to figure out how to change dosing, eating, activity, or whatever is necessary to move close to the goal.

The one case in which it might be permissible for the doctor to react negatively is the case of a patient who has stopped taking insulin regularly and is seriously putting their life at risk. In this case it could be permissible to attempt to "scare the patient straight." Even in this case, however, the subject should be approached with compassion and not with anger.

Despite consistently achieving an A1C that impresses our practitioner, I refuse to look at the A1C as a grade that says we're good diabetes students. The fact is, we started with a lot of advantages. We're able to afford the latest technology. We're intelligent and well-read and did a lot of our own research that has helped us manage Kittygirl's diabetes. We're not afraid to step out and make our own decisions about diabetes (with the blessing of our practitioner). Not everyone has had our experience.

Some people are struggling just to afford the basic insulin and blood sugar meter. They may  not even have a prescription that allows them to test their (or their child's) blood sugar often enough to understand blood sugar patterns and make adjustments. Or perhaps their doctor's protocol doesn't take into account the most recent research but it's the only doctor in their town and it's not within their resources to look elsewhere.

With the exception of people who are burnt out and truly not caring for themselves well, every adult with diabetes and every parent of a child with diabetes is doing their best with the resources they have. In this context, I believe that comparing A1Cs is counterproductive. Whether you're sharing your/your child's amazing low A1C to celebrate it or sharing your/your child's high A1C to commiserate, it doesn't actually do anyone any good.

Diabetes involves a lot of data. That data, including the A1C, is a useful tool to help us figure out our next steps. That might mean continue to do what you're doing, or it might mean you need to make some changes. Either way, sharing your/your child's A1C on Facebook isn't going to help you with that.

In Which I Review a Book That Changed the Way I Look At Diabetes Management

Disclaimer: I purchased this book myself. I have not been compensated in any way for this review, and all the opinions herein are my own.

A lot of people are given seemingly inconsistent information when they are diagnosed with type 1 diabetes. They are told that they can eat a normal diet as long as they cover the carbohydrates with insulin. However, they are also told that they should keep their blood sugars within range as much as possible.

Unfortunately, with the static diabetes management style that is still most often taught by well-meaning endocrinologists and diabetes educators, it is impossible to avoid a large spike in blood sugar after consuming a typical carbohydrate loaded meal. If the insulin ratios are correct your blood sugar will eventually come back down into range, but it will inevitably be high for at least a couple of hours.

A combination of a static management style and a desire to keep people from having frequent low blood sugars leads to the current A1C recommendations of 7.5 for children and 7.0 for adults. These are well above the A1C for a nondiabetic, and they aren't even achieved by about 80% of people with diabetes.

Some have chosen to address this crisis by eating low carbohydrate diets. That is absolutely a viable solution that works well, and I'll review two books later this month that speak to that option and have provided relief and renewed health to many people with diabetes.

However, the choice is not between a normal diet with roller coaster blood sugars and a low carb diet with mostly in range blood sugars. There's a third way, proposed and used by an endocrinologist who is a long time type 1 diabetic himself: Dr. Stephen Ponder. Dr. Ponder calls his dynamic diabetes management style Sugar Surfing, and it has allowed many people to have lower and sometimes even nondiabetic range A1Cs and mostly in range blood sugars while eating whatever they want to eat, within reason.

The one essential tool for sugar surfers is a continuous glucose monitor (CGM). Some people find an insulin pump a useful tool as well because sugar surfing often involves giving more doses of insulin than you would give on a standard static management plan. However, that is a personal choice. Many people, including Dr. Ponder himself, have successfully surfed their blood sugar waves using multiple daily injections.

Dr. Ponder challenges type 1 diabetics and their caregivers to use their CGM graph as a tool to understand how food, insulin, and activity affect their blood glucose trends and then to act on that knowledge.

His writing style is conversational and easy to understand, despite the fact that he uses some medical terms and introduces all new terms (such as delta wave and shelf) related to sugar surfing. It's easy to read this book over a day or two (I read it for the first time over two mornings while Kittygirl was at VBS the summer after she was diagnosed), but you'll want to keep coming back to it to gain a deeper understanding of sugar surfing as  you continue your journey with diabetes.

I won't give away all the secrets of sugar surfing in this review. Get yourself a copy of the book (a free e-book is available for new diagnosed type 1 diabetics at the sugar surfing website). However, I will say that Kittygirl would not have an A1C and time in range that consistently impress her endo and blow away her pediatrician if we had not found this book and applied its methods. Dr. Ponder also gives seminars all over the country in which he teaches the methods in his book. You can find upcoming dates on the website.

All that, and we're actually pretty mediocre sugar surfers. We don't apply all the techniques consistently and we almost never takes notes about either successes or failures. However, even if you're not ready to apply everything in this book, just changing one or two things could make a huge difference in your or your child's diabetes management.

Think Like a Pancreas, which I reviewed last week, is my #1 recommendation for people to understand what having diabetes means. Sugar Surfing is my #1 recommendation for people who want to take the next step and take control of their diabetes instead of letting it control them. Sugar surfing well is not easy, and you will inevitably fall off  your surfboard on occasion. However, the results are well worth learning the techniques and putting in the effort.

In Which I Reduce My Child to Tears Because She Didn't Do the Job Her Pancreas Should Have Done

Spoiler alert: I am not  a perfect parent, in the realm of diabetes or otherwise. My goal is to parent my children well and to address any problems or hiccups brought on by their challenges or just by being kids calmly and rationally. However, that is not in my nature, and all too often I crash and burn in that area. I experienced a crash yesterday that I'd like to share about.

Kittygirl is 8.5 years old, and closing in on 3 years with diabetes. Because she was diagnosed at a fairly young age (just weeks after her 6th birthday), in the beginning we kept a pretty tight rein when it came to managing her diabetes. We did everything for her for over a year, then we slowly started to introduce more independence. The summer before second grade she started testing her own blood sugar. The summer before 3rd grade she started using her insulin pump with adult supervision.

The ability to use her insulin pump with an adult looking on has opened up a lot of opportunities to Kittygirl this year. First of all, she no longer has to go to the nurse's office before lunch at school. Her teacher just quickly supervises her in the cafeteria before lunch. We've also given her more leeway to attend events with adults who have no real training in diabetes care. Two examples are an after school activity called Girls on the Run and a Parents Survival Night where she takes gymnastics. Both of these have had mixed results, diabetes-wise.

The Parent Survival Night includes dinner. Pizza is provided. We would allow Kittygirl to eat pizza if she wanted to, but she hates pizza (remember, she's extremely picky), so she brought her own packed dinner, including a sheet with a carb count for everything she packed. The only "training" the workers received was being told that they needed to doublecheck that Kittygirl entered the number on her sheet into the right place on her pump. They did that, but Kittygirl forgot to eat 10 carbs of her dinner and her blood sugar went a little low.

On the bright side, I reacted quite calmly when I found out what happened that time. I reminded her that it's important to eat everything she boluses for, even if she's at a fun activity. I told her that we'd give her another chance to do better, but that she could lose the privilege of going to such events if she repeatedly forgot to eat her whole dinner.

Yesterday's incident was worse - both in the degree of what Kittygirl forgot to do and in the degree of how I reacted to it. Twice a week after school, Kittygirl participates in Girls on the Run. This is a great program that teaches girls to be healthy and confident. Every lesson includes both some learning time and some running time, as well as a snack provided by the program. I met with one of the volunteer leaders before the first lesson and went over some basics of diabetes. I told her that she or another adult should doublecheck that Kittygirl entered the right number of carbs in her pump before eating the snack, and that she should text me with a picture of the snack if there was any question as to how many carbs it had. They've ended up bringing packaged snacks with an easy to find carb count, so I haven't needed to step in in that realm.

Up until yesterday, Kittygirl has been able to find the nutrition information on the packages easily and bolused the correct amount. For that reason, I had no idea that the coach had completely forgotten that she was supposed to be doublechecking the pump and Kittygirl had never reminded her but rather just gone ahead and bolused on her own. This fell apart yesterday, when she ate a snack and somehow completely forgot to bolus for it.

Usually, when I pick her up at 4pm, Kittygirl's blood sugar is in range or even low, because she spends the last 20-30 minutes of the lesson running. However, yesterday at pickup her blood sugar was 225. Our goal is to keep her blood sugar under 180 at this point, and we intend to lower that goal once we are consistent at reaching it close to 100% of the time. Normal blood sugar generally runs between 70-120, so even 180 is kind of high, and 225 is about twice as high as a nondiabetic's blood sugar is likely to be.

When I looked at Kittygirl's pump (she still prefers to have me bolus her when we're together) to see if she might need more insulin. I saw that there was no insulin on board. What this means is that she had not given herself any insulin through her pump in 3+ hours (this doesn't include her basal, which is constantly running). Well, that solved the mystery of why her blood sugar was high.

First I calmly asked her if she had eaten a snack. There was always a chance that she didn't bolus because she didn't eat a snack, and the high was caused by some other factor. She replied that she did eat a snack. I then asked her if she had bolused for the snack, and she replied, somewhat nervously, "I thought I did." I told her loudly that she, in fact, had not bolused for the snack, and that's when things started to fall apart.

She asked me what I had brought for her to eat on the way to dance class, and I told her that I had brought a banana and a granola bar, but that I was considering not giving them to her because her blood sugar was already high and I didn't want it to go higher. She started to cry, and, instead of taking that as my cue to calm down, I ramped up and told her that, if she couldn't remember to bolus or to eat all of her food (yes, I brought up an incident from nearly a month earlier) we would have to take away the freedoms we'd given her this year.

She continued to cry and said she just forgot this one time and really didn't want to lose her privileges. She said she'd do better. At this point, we'd arrived at the van and she climbed into her booster seat and curled up in a ball.

It should have hit me earlier, but it was then that I realized just how wrong my reaction had been. Yes, Kittygirl is a very responsible 8 year old, but she's still an 8 year old. None of her friends at gymnastics need to remember to eat all the carbs they bolused for. Their pancreases just makes insulin for however many bites or pieces of pizza they eat. Her friends at school don't need to remember to look up the carbs in the snack and bolus for them. Their bodies just make insulin for whatever they eat. It's not fair that Kittygirl has this responsibility, and it's not unusual that, at 8, she might forget about it occasionally.

I calmed myself down and apologized to Kittygirl. I told her that I got angry because I didn't want her to get hurt because she forgot to do something to take care of her diabetes, but that it was wrong of me to yell at her. I bolused her for the snack I'd brought and gave it to her (it didn't even raise her blood sugar, and she was back in range just a few minutes into dance class). She stopped crying, buckled herself into her seat, and asked me to start the audiobook we're listening to.

Thankfully, Kittygirl is very forgiving and recovers quickly when I apologize for yelling at her. However, as she gets older, this may not always remain true. We've been doing diabetes long enough now that I'm able to forget just how much responsibility it is to stand in for your own or your child's pancreas. It's just part of our lives. However, it's not a responsibility that the average 8 year old has, and I need to do better at keeping that a the forefront of my mind.