Tomorrow is our quarterly visit to the pediatric endocrinologist where we speak to the doctor after the kids are weighed, measured and we test their blood’s HbAlc level. The hemoglobin A1c measures blood sugar control over the previous 3 months. When blood sugar is high it sticks to the red blood cells. The most simple way to describe it is that the amount of “stickiness” or “glycosylation” can be tested every 3 months, the average lifetime of a red blood cell.
A normal A1c value is under 6. For children, endocrinologists say anything below 8.2 is fine in order to prevent complications from high BG’s. Doctors find the A1c’s somewhat useful, especially with teens who may be less compliant with monitoring themselves. But there are dangers in trying to attain perfect A1c’s as well. Too many low BG’s aren’t good because they bring a higher risk for seizures, loss of consciousness, or worse…
In this day and age, advanced technology allows for easier testing and the ability to give insulin through a pump instead of injections. Leo’s glucometer may be used as a remote to tell the pump how much insulin to give him while he runs around the room (as long as he doesn’t run OUT of the room)! What can be easier than that? In the past, people had to boil syringes and often went several weeks or months to check a BG. Before insulin was discovered in 1921, Type 1 diabetes was a death sentence. These patients usually survived up to one year after they were diagnosed. I still shudder at the thought of this, and always will.
Of course we are grateful or these miraculous advances, but they come with a price. As parents we do anything and everything for the health and well-being of our kids. This is seen in every aspect of life, certainly not just diabetes. The ability to micromanage blood sugars by testing 15 times a day and constantly tweaking insulin regimens can make anyone CRAZY. Parents quickly learn what I and many other doctors never knew until I was in it myself: diabetes is like a living, dynamic entity. By this, I mean that no matter how closely we count carbohydrates and adjust insulin amounts, we often can’t get it right. As I have mentioned several times, there are just too many other factors. But that doesn’t stop us from trying even harder! We feel that we have more control and will do whatever it takes. Part of it is parental guilt, I’m sure. They are our children, and nothing is more important than their health. We become stressed, frustrated, and exhausted.
Early on after my kids were diagnosed, my friends saw the hypervigilance that diabetes required and asked me “what did people do before this technology?” My brief reply was “they may have had more complications.” The detailed list of complications, however, was imprinted on my brain since medical school and it ended with the worst one: shortened lifespan.
At a recent meet-up for parents of diabetics, one mother spoke about her 22 year old son who is a bright, successful, athletic college graduate diagnosed with Type 1 diabetes at age 3. Her son is doing well now, as do many Type 1 diabetics. She said, “I actually think it’s so much harder for all of you now since you have these tools, you have so much angst that comes with the perception of having more control.” In a way, we were all relieved to hear her acknowledge this. Although we appreciate the technology, we feel helpless when the erratic blood sugar swings occur despite our best efforts.
As concerned parents, what are we to do? The best advice I have heard is the following : Living with diabetes is a marathon, not a sprint. I try to remember this. If it was something that affected our own health, maybe we could let up for a while and take a short break from it. Because it’s our children, we continue to monitor at the intense pace that technology allows. While they are young, we can still help our children manage their diabetes and teach them how to be independent and responsible. We learn that it is a marathon, and there are bad weeks and bad months. At 6 years old, Leo’s diabetes management is much easier than it was over the past 5 years, while Sam is entering adolescence and his management is becoming more difficult. I can only hope that I have succeeded helping him learn how to care for himself. After all, this is what they will need to do after they leave our homes for college and beyond. Then we can stand by the sidelines and cheer them on as they continue to run the marathon.
I wonder what their A1c’s will be tomorrow…
Good luck tomorrow!!
I enjoyed reading your post and can totally relate. I am still surprised at the joy that a good a1c can bring to me–or the feeling of failure of a less than ideal one. I know rationally that it is impossible to have only in-range numbers and have exhausted myself and frustrated my son trying–I think of diabetes as a puzzle where the pieces are continually changing shape–and the marathon analogy is helpful because it truly is more helpful to look at the big picture–and so hard not to get bogged down with the small details. My son is 12 and planning to attend sleep-away camp for almost 4 weeks this summer–Im already nervous but trying to best prepare my son to be able to calmly and capably deal with his care–and for me to let go a little and trust him to be able to manage successfully. I appreciate your blog and find it helpful to read stories and instances that I can relate to so well. You truly have your hands full with more than one child dealing with diabetes–and celiac– my son also has celiac and is gluten-free–I appreciate how difficult parties/school snacks and other social situations can be–and enjoyed your post about your son making the necklace. I think these challenges make us more creative as parents and make us as well as our children good problem-solvers! Hope you have a great appointment tomorrow.
Thank you Susan for your thoughtful comments. I agree that both we and our kids become more resourceful as a result of these challenges. My older son has spent 2 summers (4 week sessions) at overnight camp and they have gone well. I’m glad you have been enjoying the blog!
Thank you to all my friends who serve as my secret editors as well. You are correct. I meant to type “sprint” not “race”. I corrected it.
Love reading your posts. So wonderful. Thanks for sharing.
I love this post, especially the parts about how we can do everything “right” and still not always get the outcome we wanted. I always cringe when someone tells me about their loved one who has / had diabetes “but didn’t take care of themselves”. Because I always wonder if they were actually trying their hardest but didn’t get the outcomes they were working for. Diabetes is a disease that comes with far to much judgement.