Caleb started using the DexCom Seven Plus continuous glucose system in September. This week was his first endo appointment since starting, a tidy three months later. I had no apprehensions about this appointment. In fact, I expected us to be in and out quickly. We just needed an update to Caleb’s prescriptions in addition to the normal routine.
I was however curious to see what impact using DexCom had on Caleb’s A1C. His A1C results have always been strong and we seem to keep chugging along.
This quarter’s results were no different. His A1C was unchanged. I wasn’t necessarily expecting a change, but I am a numbers and measurements kind of person. Even if it went up, I could say we were dealing with lows better. We had introduced a significant enhancement to his diabetes care. It seemed odd not to have it reflected in “the number”. If there had been any measurable difference, then I could attribute it to CGM and thus justify its use. His A1C was not giving me that justification.
So why are we doing this?
My biggest reluctance to starting CGM was asking Caleb to endure more discomfort without realizing a tangible benefit. He would have to be poked. He would have to wear the transmitter and carry the receiver. He would be the one who would be interrupted by all the beeps and alarms. Of course this is all to improve his glucose control, but that’s not measurable to him. I would be able to rest a little easier at night. I would be less stressed when separated from him. I would be less anxious between finger sticks wondering what was going on inside him. It seemed he was making all the sacrifices and I was getting all the benefit. So it would be nice to have something to point to to say yes indeedy, this is worth it – look, your A1C shows it. There’s no doubt about it. This was the right thing to do. It’s all here in black and white.
That is not the case.
Caleb’s doctor explained that when you already have tight glucose control, CGM typically will not change your A1C result. However, the quality of that result is often improved. In other words, the average of your blood glucose is still the same, but you are avoiding the high highs and the low lows that cancel each other out. The peaks and valleys are more subtle. The A1C remains unchanged, but it’s still a “better” A1c.
Hm. Okay. So do I believe that is the case with Caleb? It may be. I feel like we have caught things quicker and there are less surprises. We still have highs and lows, but they seem less severe. I don’t tend to go on feelings though. I like hard facts. Embracing this concept, although perfectly logical, isn’t all that easy for me.
After tweeting my concern (and doing a poor job of it because I led people to believe that I was a bit of a lunatic and wanted Caleb’s A1C lower and truly that was not my objective at all) I believe I got the justification that I was looking for. My wise friend, Melinda, helped me get there. She has a teenage son who has lived with diabetes since he was just younger than Caleb is now. Talking to her is like taking a magical trip into the future and getting a flavor of what it might hold for us.
I realized, with Melinda’s help, that an A1C isn’t the only way to measure the success of CGM. From the beginning I have stated that DexCom provided me some relief. I could see things before my eyes instead of worrying and wondering. I think I got so used to that so quickly, that I didn’t realize how much of an impact it has. I know that I am generally less anxious about Caleb’s BGs. I am wound pretty tightly to begin with, so it doesn’t take much to get me excited. There is a true, tangible value in decreasing the stress factor. It’s one that is very important to me. I know that Caleb has a lifetime of this management in front of him and how I handle it today will impact how he handles it tomorrow.
These are Melinda’s words that eased my worries:
“But HE benefits from having a less stressed-out parent. They certainly pick up on our cues. There’s a lot of value in that too.”
I know I do a good job of keeping Caleb’s blood sugars in tight control. I also know I do a poor job of hiding the impact the out of range numbers have on my psyche. That is where I need help and DexCom has provided it.
The answer is no, A1C impact is not all there is to CGM. There is much more. Thank you Melinda and all my Twitter friends for helping me understand that.
This is Caleb... 
Not only has it provided peace of mind for you and Caleb day to day, but also think of the future too. He isn’t having as many highs and lows to damage other parts of his body over time. Remember the comment you made shortly after he started the CGM? You were worried about his line looking like a lie detecor because of all the bouncing up and down. Looks like you guys have things working a little better for you now.
You are doing a great job, even more so now since you guys have the CGM to prove it.
When we were choosing our pump, the educator said one thing to consider was if we wanted a CGM and did we want it integrated.
I needed to jump one hurdle at a time and went with OmniPod for what I saw as it’s pluses.
With our first visit after getting the pump, I thought we’d see a huge difference in her A1C. But I had to remember that we had only been pumping for a month at that time. Her number did go down, but of course the doctor said there is still room for improvement.
I think her next visit will be the true test.
I’m a numbers person, too. I wonder if having even more data would just send me over the edge!
Its crazy that his number is that low and you’re avoiding lows so well! I feel as if I was a parent of a child with diabetes, I would want to keep them running a little highter – maybe 120s-130s- to not worry about the lows that they may or may not tell me if they felt. My grammar is all wrong, but I am impressed that the CGMS has allowed you to worry less about those scary lows. This will impact his life so much in a way he wont’ understand until he reaches the middle of his life and is complication free – you’re such a great mom.
Sarah
I can’t quite compare my own parents managing my diabetes when I was Caleb’s age to your management of his, since things were very, very different 28 years ago. But it is quite clear that you are doing a phenomenal job with him. You manage his bg readings better than I do my own lol! Even if you’re not seeing “proof” that the CGM is working on helping keep his diabetes under control, I think Melinda is right in that all the proof you need is the decrease in highly fluctuating readings and more importantly the peace of mind it gives you to know where he is at all the time. And most likely those 200’s won’t turn into 3 and 400’s because you caught it early or those 70’s won’t turn into 30 and 40’s. That is what I like most about the Dexcom. I’m glad you were able to realize that 🙂
Glad to have helped you Lo! The wonderful thing about Twitter/FB and the DOC is that people all along the journey of managing diabetes can exchange information, ideas, support and love. It is the ultimate pay it forward venue IMO. Now that Michael is 17 and getting ready to head off to college next fall, I realize that we started that journey to independence a long time ago, with plain old life AND managing diabetes. When he was little in pre-school and grade school a CGM would have saved me countless hours of worry! It is a delicate dance to figure out how to “let go” of the worry, and when to let your child take over managing things. We took our cues from Michael, and he has been right most of the time with what he can and can’t handle. Caleb is growing up to be a capable, informed, confident PWD. Just what you want him to be : )
Ever since Brendan was diagnosed, we were always taught that the complications (kidneys, limbs, nerves, etc) later in life are due to the swings in blood sugar, the big gaps. So the more we can close those gaps, the less likely complications are. So, with that said, if having a CGM can close those gaps for Caleb and make that control more controlled, you are headed in the right direction, lower A1C or not. And hey, being a mom of a child with type 1, I would have to totally agree that anything that helps the psyche in a postive way, is good for everyone involved. I always have to remind myself that diabetes is not just a physical condition, it is an emotional, psychological, spiritual condition too. It affects the entire person and family. It sounds to me like the CGM is working for you.
My entire family suffer from diabetes it is a bad disease if not taking good care of it..can cause to damage some internal organs but you can live with it just need to take madicines and watch your diet.
Thank you everyone! Your comments have helped solidify things even more for me. It’s clear that to expect a numerical change to Caleb’s A1C doesn’t make a lot of sense based upon where it has been for the last couple of years. Sarah, you are exactly right – Caleb going from a liar to a truth-teller I think is why I thought there might be an improvement :). I see now that we DO have an improvement, it’s just not quantifiable in the way that I am used to. With a new depth of technology comes the benefit of a new depth of information and analysis.
You guys are all great! The time you take to read and comment means so much to me! I can never thank you all enough!!
Hi Lorraine,
I just wanted to connect with another T1 Mom. My 3 year old has diabetes and was diagnosed in February 2007. Your blog is amazing! Thanks for sharing all your experiences. It helps all of us band together and not feel alone in our journey.
Your kids are adorable!
We are going to put in a new Dexcom sensor after a three week break. Numbers were steady and pretty good so we took a break. As of two days ago, another growth spurt so Dexcom will go back on. Best with full time use, but I believe it is fine to use half or three-quarters of the time. A1c is coming up soon, and numbers have been high past two days so time will tell if this break effects the A1c. Since our A1cs have usually been in the low to mid-sixes we did not notice a change in A1c number, but more in-range numbers means the low A1c is accurate. Did hope for a reduction, though; hard not to…..
Our dexcom is in the mail…my DD can’t wait.
Congrats and good luck!