Yet Another Endo

Before I had diabetes (I was diagnosed late, at 29) I never gave doctors much thought. I had a primary care for semi-annual physicals, saw my gynecologist once/year, dentist twice/year and that was about it. My relationship with my primary care doc was nonexistent – I just didn’t see her often enough. That all changes with a chronic illness. My endocrinologist (along with a CDE & nutritionist) was someone I began seeing at least 4 times/year and we had to work together to improve my diabetes management.

My first endo (you never forget your first!) was awesome. He was a T1 himself, used the omnipod (though I didn’t find that out until I told him I had been looking at pumps and liked the omnipod the most), and pushed me to live up to my own high expectations. He drove me crazy sometimes, but mostly he motivated me to be on top of my diabetes game. He understood how hard it is to deal with basal rates, i:c ratios, excercising & staying active, intimate relationships, and burnout — but lived life to the fullest himself. He was more than an endo for me – he was a mentor. He worked with me to get below a 6.0 A1c so I could get pregnant as safely as possible and always had confidence that I could do anything I set my mind to.

When he left, I considered trying to switch to his new practice even though it would have been about a 2.5 hour drive each way. In the end, I stayed in the practice (with the CDE who was the best “tweaker” I have ever known – also a T1 and on a pump) and switched to the other endo. She was nice, and had a daughter nearly the same age as ours so we had that in common. In some ways, working with her was a break after Endo #1. She was always so impressed with my management “compared to” so many other patients. She might suggest a small change here or there but mostly just left it up to me (and the CDE) whether I wanted to change anything or not. She was also very easy on me over lows. She wasn’t convinced that the science could really show that the same blood sugar level was dangerous in different people. If I felt ok at 55 then who was she to say that it was a problem? More than 5-7 lows in a week (below 60) and she would raise an eyebrow and suggest that I talk to the CDE about making some changes if I wanted.

After time though, I missed the higher expectations and felt disappointed before and after our appointments. I tried to say that I didn’t really care what other people had for A1cs, I only cared to improve my own management but nothing changed. Once the Bear was diagnosed I had my hands so full of her diabetes that my own took a total backseat and my visits to the endo were quick and uneventful. By that time the great CDE had left as well and gone to a practice where I didn’t hear good things about the doc so I didn’t want to follow her. So, for the past couple of years I have just seen the endo either 3 or 4 times/year, made my own changes in between when a pattern got bad enough that I couldn’t just ignore it, and worked hard on the Bear’s pump settings and daily care. My A1cs have still been fine, but I know I have way more lows than I should and that contributes to foggy thinking, fatigue, and potentially dangerous situations.

Last fall, my endo told me she and one of the other endos were both leaving the practice. She was going someplace further away but still very driveable for me (about 30 minutes each way instead of 5). I thought about it, but there was no compelling reason to follow her. I evaluated the other practices within a reasonable distance but they all had a problem (the office staff cancels your appointment when you show up rather than calling first, the doctor is “odd”, the doctor is rigid – his way or the highway, the hospital & practices have been in the news a lot in the past year for avoidable, bad patient outcomes). There was one endo left in my practice (I had only talked to him once when he was on call and I had an emergency) and it took me so long to look at other options, I decided to just keep my appointment with him. That was in November/December and I was pleasantly surprised. He still did a little bit of comparing, but mostly paid attention to what I was saying. We had a real conversation about statins and my reasons for not wanting to go there and I was impressed by his knowledge of the current research and his open mindedness about individual management. He seemed like someone I could work with, and someone who would challenge me a little here and there. I made my follow-up appointment for March and felt pretty good about the whole thing.

Until, I went to get some labs done and the lab tech couldn’t send the results to Endo #3 because he was leaving. What??!!?? That is not the way you want to get that news. I contacted the practice (no answer). I contacted the hospital – oh yes, letters are on the way to all patients. Your satisfaction is important to us, blah, blah, blah. They would be getting an interim endo and they were searching for someone permanent. Again, I thought about changing practices but honestly was discouraged enough (endo burnout?) that I just didn’t do anything at all.

This last week I had my appointment with the locum tenens (fancy medical term for temp doc). I asked at the desk – “how is he? and is he temporary?” and they said that everyone really likes him and that he wants to stay. I then waited for a veeeeeerrrrrrrry long time. Finally the nurse came to get me and said that she was having trouble downloading a meter — not mine — and that’s what took so long. (no comment) She was very cheerful and a little surfacey which didn’t make me less irritated. After another long wait (hello twitter! Thank you @klewing and @kellyrawlings!) the doc came in. He’s youngish (maybe late 30s or early 40s), Indian, professional. He started off by asking me how I was feeling about my diabetes. Ummmm… not that I mind being asked. But it immediately felt too personal in a way. He has no idea who I am, how I have ever felt about my diabetes, what my answer might mean. That’s not at all fair to him – he just met me, he asked me a very good question (not “what is your fasting bg most days” or “what did you do on this day that made your bg so high?”), and I immediately went all porcupine. The whole thing just felt intrusive and judgey. Thank goodness @kellyrawlings tweeted:
tweet

When I feel at odds, I remind myself that endos & other diabetes HCPs willingly “chose” #diabetes & really do care

The rest of the appointment was better. He saw one after-dinner low and suggested I change my i:c ratio. I said “because of 1 low bg?” He looked a little sheepish and said maybe I could just try it and if my numbers were high I could change it back. So I did that. We talked about lows for a bit – he talked about the impacts on cognitive impact from too many lows. At the end he said he wanted me to meet with the NP for the next appointment – apparently she is very good with pump settings and bg analysis. And, he asked me when the last time was that I saw the nutritionist/CDE. It’s been years so I have an appt to see her as well.

In the end, I decided to just give it a chance. Of course I won’t feel very comfortable with someone I don’t have a relationship with. My diabetes and I have been working together for so long, it is hard to let a stranger in. I like that he suggested me seeing the other people – that says that he does see room for improvement and doesn’t necessarily think he has all the answers. He is taking more of a team approach and I haven’t had that in a long time. I’m still tired of all the change. I miss the comfortable give and take that I think was very beneficial during my first few years after diagnosis. But, I’m taking @kellyrawlings’s comment to heart and going to give this new endo the benefit of the doubt. Now, fingers crossed that he sticks around for a while.

Posted in Burnout, Endocrinologist, Hypoglycemia Unawareness, Uncategorized | Leave a comment

Stable bgs get left at home

Routine. Or, more accurately, the lack of it. My diabetes (of course, your diabetes may vary) is calmest when most of what is going on is the same as always. When I get about the same amount of sleep, exercise, food (amount/type), I can have wonderfully stable graphs on the CGM. Start to mess with one or more of the variables though and no matter how much I try, it seems like I can’t find a happy medium.

The trip to Indianapolis was great. Got time to myself, tried some local food & places, saw some local art, saw colleagues I’ve known for a long time and met some new ones, and learned useful stuff at the conference. Somehow that happened even when I stayed at a bg of 50 for a few hours at a time. I was paying very close attention, but once my bg did go low (which was nowhere near as often as some trips I’ve been on… the BHE has been a super good influence) it took a lot to bring it back up. I went through almost 1 full jar of glucose tablets from Tuesday to Saturday on top of regular meals.

There was a lot of extra walking of course – other than the two travel days (SO much sitting!!) I didn’t have a day of under 8,000 steps when a normal work day will likely be around 6,000 – and yesterday I clocked 20,784 steps on the FitBit. All that walking over the whole day means that I’m battling the extended lows while I’m still burning up glucose to create new ones. Temp basals are my best friend sometimes. I used -95%, -75%, and -50% a lot this week. [As opposed to my flight out here when I was on either +75% or +50%*]

Eating out at different places is one of my favorite parts of traveling – this trip I went to a Brazilian steakhouse (yes, I’m a pescetarian, but was with others and the “salad” bar was unbelievable), 2 local breweries, the city market (crepes made to order!!), a wine bar, and an Italian restaurant. When I eat out at home, about 95% of the time it is somewhere that we go to often, with meals that I know very well. It’s just harder to carb count in unfamiliar places. My inclination is to overestimate carbs when I’m guessing (this is NOT medical advice, but don’t do that), but I really was trying to be careful so I had a couple of meals that turned out pretty well and a couple that gave me that scary-looking spiked graph on the dexcom. At least the walking and those temp basals were helpful and bringing that back down more quickly than otherwise. Successes: didn’t have one correction or bolus that seemed to result in a low bg.

I always think that I should be able to apply experience from one trip to the next one, but I’m not sure how well that works. I do need to remember to use my temp basals early and often, but the same levels at the same times might not work the next time I’m traveling for a few days.

People who are much more widely traveled than I am have offered tons of great advice on the #DOC about traveling with T1 diabetes so I recommend you do a couple of searches for travel + T1 Diabetes + blog to get information that might help you think about what you’ll do on your next trip. What I can say is that you aren’t alone if you get frustrated that your normally decent management goes crazy on a trip no matter what you do. Pay extra attention, pack extra test strips, and carry glucose. Leave your goals of perfection at home with the stable bgs.

*Last time I flew I did temp basals of +75% or higher and still had high bgs the whole time. This time I started at +75%, realized I was running steadily at 70 and backed off to +50% but still ended up making the whole section of the plane smell like grape chalk with the glucose tablets I ended up eating. I need to remember to start off small & tweak from there.

Posted in Carb Counting, CGM, food, Living with Diabetes, Pump Management, Travel with T1, YDMV | Leave a comment

On the Road with Diabetes (& the D left at home)

Here I go.

I’m at the airport gate waiting for a flight to the Public Library Association Conference. Like a lot of people I love the idea of traveling, and I like going someplace new, but I find the preparation and actual travel to be stressful. What to pack? (especially when the forecast is for temps from 30 – 60, sun, rain, snow) Trying not to forget anything important, making sure as much as possible is done before leaving work for the week. Traveling with T1 diabetes only adds to the checklist: extra insulin, long-acting insulin in case of pump failure, where did I stash the syringes?, glucose tablets, extra pump supplies (more on that below), special TSA screenings, strategy for the inevitable high bgs on the way…

I am also a D-parent so this trip means leaving my sweet bear home and not being on top of her bgs, settings, etc. all the time. Luckily her father (the BHE!) is home and there is no one else I could even imagine leaving her with. Still, it is hard. I worry about him having to do it all and the uncertainty I know that he will feel without me there. It seems to be common for one D-parent in a couple to take on most of the work in changing settings. We talked about it early on in the Bear’s diagnosis and it seemed like it would be way too confusing to try to keep track of two people possibly making different changes so I have always done it. I change my own settings as needed so my comfort level is very high and it actually eases my stress to know that I can tweak things if tough patterns start showing up. But, it means that most of those ongoing decisions are made by me and the BHE has less experience. Not that he should need to make any changes this week (knock on wood!)

I’ve mentioned here before about the bad low I had on my last overnight conference. I’m trying not to think too much about that and just concentrate on having good alerts set on the CGM and brought lots of test strips to stay on top of things. Still, there is always at least one D crisis (it seems) and this time it was my discovery that I only had enough pods to get through normal changes until I get back home. No extras for malfunctions and none for when I need to change when I get back home. What??!!?? Called and found out that my insurance change on 3/1 wasn’t in the system at insulet (because I never called them – oops) so they were waiting for authorization from my old plan. They will expedite the request for auth & the order but since I was talking to them Monday morning and flying out Tuesday morning there wasn’t much they could do. Called my omnipod rep (who has helped me out with extra pods before) only to discover he is no longer the rep. Called the new rep and left a message. This morning, driving to the airport, got a call from the new rep who is SO nice, and SO helpful, and will mail pods to my hotel. Phew. This is the thing about pump supplies… you can’t just walk into a pharmacy in another city and pick up extras.

Quick note on TSA at my home airport: They are very accommodating, helpful, and professional. I leave plenty of time so I don’t feel rushed through security. I haven’t flown that much but so far the omnipod doesn’t phase them at all and while no one I’ve run into has seen a cgm before, after a brief explanation it is fine as well. It’s obvious that they think it is unnecessary to have a pat down (not go through the scanners), but when I say I prefer it there aren’t any arguments. I’m lucky that I don’t mind being a spectacle, nor do I mind if anyone else can tell that I’m wearing diabetes devices.

Now that there is nothing to do but wait for the flight, I’m more relaxed. Just trying to prepare for the high bgs I always seem to get on the plane. I’m sure I’ll be tweeting about how things go and you can find me @poeticlibrarian.

Posted in CGM, Living with Diabetes | Leave a comment

Stranger Things Have Happened… (not really)

Normally, I don’t bother trying to describe a low blood sugar. They happen so often and I just try to catch them as soon as possible, get some quick sugar and move on. I know I have more than I should and as a result my body is somewhat non-reactive at 60 or even 50 a lot of the time.

But, now and then, I get hit with one that is different. One that has the kind of impact that I can’t just move on from in the time it takes to drink a juice box. Yesterday morning was one of those times. I still have no idea where it came from or why. I have plenty of factors to blame it on, but no way to definitively assign blame in order to avoid the same thing happening another day.

It was after an amazing breakfast of eggs benedict that the BHE cooked up — he makes the best hollandaise sauce, really, I have never had better. I know I’m hazy on the details – at least the “real” details; I can’t remember if I went low right after eating or if it was a little bit later. I don’t really remember what I did to try to bring the number up — probably some glucose tablets, juice, maybe some extra croissant? At some point I was satisfied that I had brought it up enough and went to lay down on the couch and at some point I fell asleep.

The details I do remember are all the ones that (I’m pretty sure) were only happening inside me. I felt like I had walked into that field of poppies that Dorothy & the gang stumble into on their way to the Emerald City. Or more as if the field of poppies was made of concrete and had fallen on me. I was cell-tired and felt crushed by the world in general. While I was sleeping, I felt like I was awake but couldn’t open my eyes. I “knew” I was on a couch, but it was in a different part of the room and facing a different direction. At one point I did open my eyes (no idea if I really did or not) and was looking at a little clear plastic thing on the ceiling, trying to figure out what it was. Suddenly it started moving very quickly, just like an awful beetle but so fast across the ceiling and clearly heading for the wall that the couch was next to. I tried to yell for the BHE but I couldn’t. (just for the reality record, there is no plastic thing on our ceiling) At some point after that I was outside in the snow. Wherever we were, it was like a desert but with snow instead of sand. I knew that the Bear was walking up ahead of me, towards a truck sort of thing – maybe an ice cream truck? And the BHE was somewhere near us. I was so exhausted and heavy, I couldn’t walk anymore so I laid down in the snow, kind of created a hollow and laid down with my face right in the snow. It was cold but felt good – soft instead of freezing and prickly. Eventually the BHE came along and was trying to wake me up and get me up out of the snow, and I was aware of that, but just wanted to stay as I was.

After a couple of hours, the BHE did wake me up. He had checked my CGM and I was rising/high. I was very disoriented, couldn’t figure out what the deal with the couch was (in a different place! facing a different direction!). When I tried to talk, I felt like the words were getting tangled up before they could get out of my mouth. I felt like I couldn’t remember how to speak clearly. To myself I sounded slow and as if my voice was going through a modulator of some kind. I think the BHE & the Bear could understand me though, so maybe I sounded completely normal.

I stayed up, had lunch, and went out to do errands with the Bear. I felt guilty that I had slept all morning while the BHE cleaned up the whole kitchen, worked on the snowy/icy driveway, moved laundry through, and entertained the bear. A few hours out doing things seemed like it would give him a break and also probably help to clear the cobwebs in my head. Instead, I spent the whole afternoon feeling like part of me was in a parallel universe that was about 45 seconds behind this one — or maybe the real one was 45 seconds behind. I kept having the sensation that I couldn’t understand what I was seeing, or hearing and then like a bad sci-fi movie, my brain would slide into place (like with a special effect of colored lights simulating movement through a wormhole or something) and everything would become clearer and unified. The last errand we did was our weekly grocery shopping since we expected there to be enough snow by the next morning that we wouldn’t want to go then. I’ve never felt so challenged by food shopping. I actually started to feel a bit motion sick by the end after my brain sloshing into place over and over again. I have no idea how long we were in the store, probably just a normal amount given that it was busier than when we usually go, but it felt like it took about 4 hours.

My blood sugars weren’t unusually high or low for the rest of the day (at least I don’t think they were…). I had my CGM and tried to pay attention. I did have another low at one of the stores, but it was more straightforward — CGM showed it, had some glucose tablets, end of story. Around 10 p.m. I started to feel like my brain was staying in one place.

I can only remember one other time I felt like I wasn’t in control of my body/mind — I was away at a conference and dropped very low very fast in a session. One part of me knew I was in trouble but the rest of me just couldn’t seem to do anything about it. I was sitting next to a colleague/friend and just kind of followed her out of the room when the session was over. I sat down in the lobby of the hotel/conference center and likely would have sat there until I passed out but she realized that something was wrong, got me to the hotel’s restaurant and got the waitress to bring me a big glass of juice. I remember the waitress talking to me after we sat down, and I remember holding a menu, but I couldn’t read any of the words on the menu and I couldn’t understand the waitress or answer her. It took a while, but when the juice finally did its job, I was drenched in sweat, shaking, had blurry vision, and was completely ashamed. The rest of that day I had a terrible headache and that hungover feeling that sometimes comes after lows — no energy, all-over body aches, etc. But, the inability to take action really only lasted during the low.

I think that some of these experiences contribute to the feeling of being alone that so many PWDs have surrounding their diabetes. How could anyone understand how a low blood sugar can feel if they haven’t experienced it? And, maybe even worse, how can anyone understand that I could be at the very same number tomorrow but be functioning fine, have some juice, and be over it in 20 minutes? Recently, I read a great blog post (which of course I can’t find right now in order to give credit… If you know it, please put the link in the comments!!) that I think I was pointed to from Twitter in which the writer (Jen Grieves) said, “That’s the thing with diabetes – it’s fine until it’s not fine.” When I’m low, I’m fine, unless I’m not. And it isn’t necessarily predictable when I won’t be fine. The T3s in our lives are awesome at supporting us and helping us get through the lows (especially by getting us some sugar!), but sometimes you need to know that someone else “gets” it. Thank goodness for the DOC & things like Facebook groups and the #dsma chats on Twitter. I hate to think about the Bear experiencing these low side effects, but I know she will. Will it help her feel any less alone to know that I know what it can feel like?

Of course, it’s hard on our T3s too. I am scheduled to go to a conference in March and it is the first far away, overnight one I have attended since that last experience. None of that had even crossed my mind when the BHE & I were talking about it and he said how anxious he feels about it. Of course he does. I may feel helpless sometimes because of my diabetes, but I have much more control over it than he does.

I’m feeling much better today physically, but burdened mentally. And, on top of all the other things, I’m still a little worried about that plastic beetle.

 

 

Posted in Getting it Wrong, Hypoglycemia Unawareness, Living with Diabetes, T3 | 1 Comment

CGM So Far

I wouldn’t have thought that I would have anything new to say about the Bear using the Dexcom G4 since I’ve been a CGMer for so many years, but it is interesting how different it can be.

1. I am much better about always confirming with the bg meter before treating the Bear. I know I should always do that for myself too, but experience has proven the Dex to be remarkably accurate on me and I have body sensations to back up the data I see. If I feel low and Dex says I am low then I usually just have a few glucose tablets before actually testing. I have even been known to correct based on the Dex number if it “feels” right. With the Bear, I have no way to do a physical double-check so the bg test is critical before treating. Not to mention that our experience so far shows less accuracy of the G4 on the Bear than on myself. Interestingly, with the recent announcement of its approval by the FDA for pediatric use there is mention of lower accuracy in children than adults, and even more so in the lower ranges (check out this useful post on A Sweet Life.

2. I had no idea how much this new “thing” would engage the Bear in looking at her bg numbers, rising or falling trends, and what action needs to be taken. She asks many more questions, tells us what the CGM is reporting, and sometimes offers what she thinks she should do (it says low, do I need to have glucose tablets?). I know that the more she understands about her own care, the better her health will be through her life. I don’t know if seeing the information on the screen and having the CGM show high or low will begin to help her to understand how her body feels at different bg levels, but it might.

3. I thought that the Dexcom might quickly lead to more sleep at night — after all, I shouldn’t need to set my alarm to get up every night to see if she needs a correction or treat a low. So far, given the sometimes inaccuracy, we’re getting up more like 3 times/night trying to figure out why the Dex is alarming, or why it isn’t reading, and testing her to see if anything really needs to be done or not. Please tell me that eventually we’ll get more sleep…

4. One thing I have always loved about my CGM is that it helps me make better-informed decisions. If I am 130 before exercise knowing whether I am rising or falling helps me prepare more effectively. This is true for making decisions for the bear too, but it is also so much more complicated than before. Writing out instructions for the school, babysitters just went from 1 page to 4 pages. There is a more instinctive understanding of the data when you know T1 management well — you can do a lot of the if-this-then-that calculations quickly in your head — it’s almost “obvious” what to do given a CGM graph, a bg, and knowing what just happened and what is happening next. But, for others who don’t have such a robust understanding of how the body processes foods, reacts to activity, stress, temperature, that insulin curve (when does it start working, when does it peak, when does it stop working), the impact of basal rates at different times of day, the last i:c ratio employed, etc., etc.

We’re still learning and I imagine we will be for a while. When to react to a trending arrow and when to let it be, when it is most accurate and when it isn’t at all, and – maybe most importantly – when to take a break from information overload.

Posted in CGM, Living with Diabetes, Others caring for your T1 kid, School, Uncategorized | Leave a comment

Meeting of the Minds (and substitute pancreases)

Recently, our daughter’s teacher requested a meeting with us, the school nurse, & classroom assistant teacher to go over their “role” in the Bear’s care given the addition of the CGM. I know that I can be hypervigilant (the BHE’s word for himself but it applies to me in this case) about anything involving the school & diabetes. I have read too many horror stories and sometimes I “see” problems before they exist. That word “role” set me off… I immediately jumped to the teacher saying that the CGM was too disruptive, required too much of them, was requiring unreasonable accommodation. I sent the e-mail request off to the BHE and he read it as just a good chance for everyone to get on the same page about a new technology. Sensible :)

And, of course, he was right. When we went in for the meeting they had some very good questions and suggestions for ways to incorporate the trending arrows into the decision-making process on their end. They did have a concern about the number of “high” alerts that were happening during the day, not so much that it was disruptive (though it can be) but more that because it happens right after lunch or snack or times when the pump isn’t going to deliver a correction because of insulin-on-board, the frequency of alerts that get no reaction might lead to a tendency to ignore the alerts when really needed. Basically – could we set the threshold for the high alert to a number above where she usually goes in the normal course of a day. We came up with a number we all felt good about and even turned up the volume so that when an alert does happen & need attention, it will get noticed.

We are so lucky to be working with a team of people who really care about the Bear’s health and school experience within the greater context of everyone’s needs. I wish I could more easily accept that and not jump to negative conclusions so quickly. It’s hard to be a substitute pancreas.

Posted in CGM, Getting it Wrong, Others caring for your T1 kid, School, Uncategorized | 1 Comment

Mixed Blessings (another name for diabetes)

Ever since our daughter was diagnosed with T1 just after her 3rd birthday we have been very aware of how “lucky” we are to already have experience with my T1. Anytime there is a crisis in your child’s health, you – the parent – are going to be overwhelmed, emotional, vulnerable, confused, scared. Parents who must face the diagnosis of T1 are also “taught” about carbohydrate counting, insulin dosing (yup, this medicine that will save your child’s life every day could easily cause his/her death), hypo/hyperglycemic symptoms, emergency glucagon kits, all the “stuff” going on in the body that we can’t measure but will still impact the blood sugar, ketones, ketoacidosis, overnight testing, how/when/why to test and what to do with the results. And, they have to “learn” this before they leave the hospital so that they can start to keep their child alive. All while they are seeing their precious child in a new light — so thin (funny how much thinner they look after the diagnosis than in the weeks leading up to it), so exhausted, so fragile. And, while they are wondering, “is this our fault?” “what should we have done?” “was it because we didn’t force him to eat his vegetables?” “why did it take so long to realize she was this sick?” Not exactly the ideal conditions for learning anything, never mind something that will be of daily importance.

I recognized the Bear’s symptoms fairly early (though it took some doing to convince anyone that I wasn’t just being paranoid) so while her bgs were high enough to indicate T1, she was nowhere near ketoacidosis. They even considered not keeping her in hospital overnight. We only stayed one night and could answer all the nurses’ questions that they ask to see if you have “learned” the basics before they started teaching us. It is harder to give your child an injection than yourself, but it was easier for me than for most parents who have never given an injection at all. Both I & the BHE were better at counting the carbs in her hospital meals than the floor staff and we started talking about pumps right away. So, we were lucky compared to so many families – we had a head start on the experience and knowledge that really only comes with time & living it.

But, it is bizarre to talk about being lucky to have T1, or to have a child with T1. I had worried since before my pregnancy about the possibility of our child developing T1. “That’s pretty rare,” said the OB/GYN, the genetic counselor, my endocrinologist. The odds weren’t really any higher than someone in the general population being diagnosed. Still, here we are. Med folks always marvel at how lucky it is that the Bear sees testing bg, etc. as “normal” since she has seen me doing my own for her whole life. And, how lucky that she will not have the experience of feeling like she is the only one in the world with diabetes – even when she goes through her I-hate-my-mother seasons, I will always know firsthand what it is like to wear an insulin pump, have low blood sugars.  Yeah, that’s “lucky.”

Now, this weekend, we are about to move the Bear onto the Dexcom G4 CGM. I have been wearing a CGM for a few years – started with the Abbott Navigator, then the Dex Seven Plus when the Navigator fled the states, and the G4 since it came out. The trending info from a CGM can be invaluable — the ability to head off a low before it is symptomatic is huge. Making treatment decisions based on one number, a single point in time (not to mention one that might be 20% off in either direction #stripsafely) is at least 50% luck. BG of 100 and rising is very different than 100 and falling. I wanted to get the Bear onto a CGM before she started public school since it could help the school staff make better decisions – especially with a young child who hasn’t started to recognize/communicate her own body feelings or symptoms. Older kids might report that even though their BG is 90 they are feeling kind of low, but our kid isn’t there yet. She can be 50 and not be able to tell that she isn’t feeling well.

But, last year we had put her in a G4 pediatric trial at Joslin and it wasn’t pretty. The study docs & nurses were great but for whatever reason, we had a terrible time with the adhesive and no amount of prep, tape, iv3000, bands seemed to help. So, in the space of a few hours the poor kid had 5 or six sensors inserted in her tiny belly. The trial required that she wear two sensors and carry two receivers, one blind and one not. Even after the incredibly long first day when they finally got both to stay on for the required amount of time to get through calibrations – we lost the blinded one at home less than a day later. It was still enough for us to continue to participate and she wore the non-blind one the remainder of the time with much retaping & securing. Long story short (or only slightly less long), she was determined never to go near a sensor/monitor again regardless of the fact that I wear one 24/7.

For quite a while I have held off pushing the issue since she has been doing well at school and it seemed unfair to ask her to wear one more device that she didn’t absolutely have to. But, I know that the information that the CGM will provide could really help give her a healthy advantage and mean that she didn’t have to sometimes miss out on parts of gym or recess because the nurse is trying to see if she is going up or coming down. Finally, in the face of a potential change in our insurance coverage for DME, I had the endo put in the request and got the approval, figuring I would get the device here and then decide how to get her to wear it.

A really helpful model for our future has been Scott Benner’s blog at Arden’s Day and his twitter presence at @ArdensDay. Scott’s daughter Arden is a glimpse of a future that we would be “lucky” to see for our Bear. She is able to have much independence at school through using her glucose meter, CGM, and texting her dad. She seems to know a lot about how to take care of herself and then has the tools to check-in and get validation from Scott so she can feel most confident and get on with her schoolwork and having fun. I love that. Both Scott & @StaceySimms really helped on Twitter recently when they talked about when the parent’s decision about what is best for the child trumps other feelings. As Scott said (paraphrasing since too lazy to track down the tweet), “If Arden had a broken arm she wouldn’t get to decide if she was going to have a cast.”

So, before I started this post, I put some lidocaine cream on the Bear’s arm (and, my god, it is tiny), and we talked about putting the monitor on. She chose her arm since that is where I usually wear mine. And she chose the same arm that I have mine on right now. She doesn’t want to wear it, or at least doesn’t want it inserted, but seems to get that it isn’t a choice at the moment. So, we’re “lucky” that she has me as an example, right? Now, it’s time to do the insertion and I’m probably more anxious than she is.

Wish us luck…

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