I’m the mom to a newly-diagnosed T1D 2-year-old, and I alternate between just focusing on the daily care and its exhausting routine, looking for potential treatments/cures, and feeling disheartened by the poor statistics on complication rates. My little one really is so little, and it breaks my heart to know all the hassle and suffering he may face in the future – possibly not even the distant future. I know all of us have our struggles, but it’s pretty hard to focus on that when reading that up to 75 percent of T1D will die of cardiovascular disease.
I’m wondering how parents make use of all the research without getting disheartened? I know that controlling blood sugar levels is the first step, but it’s hard not to feel discouraged when a) much of the time he is wildly out of range anyways, despite never-ending tweaks and experiments and alterations to get him in control and b) it seems clear that glucose levels are not the sole determinant of these long-term complications and that there are autoimmunity/inflammatory processes at play that basically no one seems to have a good answer for.
So parents and those with long-term T1D: How do you stay optimistic in the face of all these complications and the ugly stats on morbidity and mortality? How do you let it motivate you without bogging you down and depressing you? Still trying to find the balance…
Technology is the real game changer. Most of the longer term studies on diabetes was done on diabetics who had to live through the dark ages. While there is never a good time to get diabetes, today is by far the best. CGMs, pumps, education, and the newer insulins give your little one very good odds of living a full life without complications.
I agree with @Jim26’s sense that new tech enables better control. Here’s my whole take on your question. Focus on today. Do your best you can today, in the next hour, in the next 15 minutes. The better your little one’s BGs the better chance s/he will have avoiding complications. All you can alter is the level of risk. You can never eliminate risk; we all live with it, even gluco-normals.
CGMs combined with wireless technology and insulin pumps will make a radical change in the way you treat your child’s diabetes. Most decisions will be automated and you’ll deal more with broad brush strokes. The future holds promise and the immediate (next 2-5 years) future is very bright.
Forget about the complications, your two year old needs your brainpower focused on now. You’ll both feel better. Stay informed, act smartly, and be tenacious. It all matters!
I agree with the above comments. Keep in mind that any studies doen on people with Type 1 now were done on people who had little to no access to modern insulin regimens and technology. I was diagnosed 25 years ago, and things are so different now compared to then (and 25 years ago isn’t even the “dark ages” people speak of—those were the times before glucose meters). Kids diagnosed today are often put on pumps and CGMs within a couple of years (if not a couple of months), and this allows for far, far better control than testing four times a day and doing two shots per day ever did.
After 25 years of diabetes, I have no complications. I think that if statistics were done on my cohort (rather than the “dark ages” cohort) the numbers would be much lower. I think of statistics were done in 20 or 30 years on kids who are being diagnosed today, they would be even lower still.
Is that really true? I guess my impression was that yes, complications are lower in newer cohorts, but still radically elevated compared to those without the condition…and the fact that my kid was diagnosed so young sort of worsens his odds of complications.
Thanks Terry4, logically I know that focusing on the here and now is the smartest course of action…it’s just that I sometimes feel the need for a pity party. I am hoping they become less frequent as I get used to his diagnosis. Right now is hard because I think of those poor embattled little beta cells which are doomed to die, and I am just not sure how aggressively I should be trying to do something to try to preserve them…and then that sends me down the research study rabbit hole… which depresses me because all the statistics are just so bleak. I think it will both be sadder and easier once he leaves the honeymoon. Sadder because I actually suspect that in 10-15 years there will be a way to preserve beta cell function in the newly diagnosed and I will mourn the fact it came too late for him, but easier because I will no longer spend time wondering “what if?”
Have you listened to Scott Benner’s Juicebox podcast? Scott is a stay at home dad to two school age children. Daughter Arden was diagnosed at two years old. Scott manages his now 11 year-old 's T1D remotely using cell phone text messaging paired up with an insulin pump and continuous glucose monitor. Scott monitor’s his daughter’s metabolism 24/7, in school, at home, at a sleep-over.
There haven’t been any studies done (as far as I know) since the DCCT cohort, so there are really no updated statistics. With the improvements found in the DCCT, though, I find it hard to believe the risk hasn’t dropped substantially since then, because the DCCT cohort were people who were diagnosed in the '60s and '70s. The treatment available back then isn’t even comparable to what’s available (and routine) today. Those of us who were diagnosed as kids are going to be at higher risk just because we’ve had diabetes for so long by the time we’re adults. But do know that there are many examples of people who have lived with diabetes since childhood and have very minor or no complications.
I have had T1 for 32 years, and the threat of complications is never far from my mind. However, I have learned to manage it over the years by trying to maintain perspective and focusing on facts. Yes, the cause of death for most T1’s will be a heart attack. But keep in mind that this is the leading cause of death for most Americans of all ethnicities, so we have plenty of company. The latest figures estimate that the average T1 life span is about 10-15 years less than a non-T1. So if the average is about 78, then that means an average of 63-68 for us. Yes, most would consider that a young age to pass, but it’s a heck of a lot better than it used to be thanks to all the great technology we have now. Even when I was diagnosed in '84, we didn’t have meters, pumps, or CGM. We were lucky to check our BG once or twice a day with strips that required a huge drop of blood, wipe it off after a minute, then wait another minute. And the result was just a visual color comparison that could have been as low as 120 or as high as 180. Super imprecise, not to mention insulins in those days worked very slowly, so correction was not precise either. So we have come a long, long way, and by the time your child is an adult I’ll bet that differential will be narrowed to 5 years or so. Think of all the great entertainers we have lost this year who were in their late 60’s. We can all agree they accomplished amazing things during that time and lived very full lives. I try to do the same. I travel, eat out, do theatre, and lots of fun social things. But I balance that by eating similar things for breakfast and lunch each day, checking my BG 6-8x/day, getting moderate exercise and staying on top of doctor visits. I am not complication-free, but I am in pretty good shape all things considered, and I have a long way to go. One of my favorite sayings is something to the effect of “Fear is the irrational worry about things that haven’t even happened yet.” Your little one has a tough road ahead, but he won’t know any other way and his diabetes management will become second nature for him. That can be a blessing. Hope this helps.
Also on your recent comment, while it can indeed be sad to think of what treatments and/or cure options there could be in the future, keep in mind that those of us who have lived with T1 for decades have been hearing “a cure is right around the corner” all that time, just like you have. Even if a cure were to land in our laps tomorrow (not likely), it won’t help me much. But that’s OK. Your son will come to a point where the idea of future generations of T1’s being helped by new technology is wonderfully fulfilling. I cry with joy when I see a toddler wearing an insulin pump because I know he will have a brighter future. T1 and other chronic diseases have a way of expanding one’s altruism on things like this.
I guess i think pretty similarly as the others.
Those studies were made back where many had no clue what they were doing, running on A1Cs in the 13s and higher, and even those didn’t all have complications.
I really just try to do my best every day. I tell myself, if i did everything I could, how can i blame myself down the road for complications? I really try to appreciate each day I live healthy as a gift. A 100 years ago my parents would have buried me at age 8. Now I am 20 and thriving, how could i ask for more?
Of course I hope to continue that healthy life, and the bionic pancreas does give me hope. I am really thankful for the technologies available to me.
I really hope that you can start to see the bigger picture and stop thinking so negatively of the future, it will be better both for you and your child!
You deserve the absolutely best!
hugs
Kuddos to all the parents of T1 children. I have only had T1 for 2 1/2 years, but watched my younger brother grow up with it. He was diagnosed at 3 years old, during the dark ages. I remember what others have mentioned about this time period without technology. My mom and dad did the best they could with the tools they had. My brother lives a very full life and has had T1 for for 45 years. No big complications.
He is probably one of the most encouraging people you would ever meet, probably by how T1 has shaped his life. There are T1 parents on this site and that will be helpful to you. You are strong and you can do this.
My now-13 year-old daughter was diagnosed with Type 1 diabetes when she was 11-1/2. Do I worry about my daughter developing complications? I sure do! But I look at the technology we use to keep tight control of her BGs currently (insulin pump and Dexcom CGM) and the improved technology which should be available within the next 7 years give or take (I’m referring to Ed Damiano’s “artificial pancreas”) which should provide even tighter control. I honestly believe my daughter will not die due to complications (including cardiac disease) from her Type 1 diabetes. And that’s saying a lot because I am, by nature, a realist who borders on pessimism. We all die from or due to something. No one dies simply “from old age in their sleep”; they die secondary to myocardial infarctions, cerebrovascular accidents, pulmonary diseases, infections, carcinomas, and/or one (or more) of a myriad of other diseases or causes, including but not limited to accidents, violence, and random acts of nature. I channel any and all of the anxiety I experience generated by the worry that my daughter might have complications into energy I use to manage her Type 1 as best I can.
I believe you are going through the same stages that most parents go through (myself included). My son was diagnosed when he was 2. As with anything, it becomes a way of life. Since he was so young when diagnosed, he hasn’t really felt a loss for anything. I too, believe that technology with help to make things easier until there is a cure…And there WILL be a cure (mechanically or biologically). I totally understand the disheartening feeling you have. You are not alone.
Like Jen, I was also diagnosed way back when (but after the ‘dark ages’) and I am also complication free 25 years later, despite the fact that I can assure you I have had my share of 250s, 400s, stubborn highs, and I probably only checked my bloodsugar a dozen times my junior year. in high school… Perfection is not required to prevent complications, and while you can’t guarantee they’ll never pop up, as my doctor says you still want to try to stack the deck in your favor, but don’t let preventing complications be your only goal [because you are still a person and need to have a life, that was the gist of the conversation that day].
As to the statistics that we fare way better now than in the past, here’s two slides that give me such comfort I thought about framing them and hanging them in my living room as a reminder that I’m not doomed. I don’t know the source for the second one, but I’ve seen it a couple times including Steve Edleman also presenting it at a TCOYD conference so I think that makes up for the fact that I can’t find its source…
Note that these go together, so even though NO SINGLE AGE DEMOGRAPHIC meets (on average) the AIC <7% goal that has been so long touted, severe complication rates are WAY down, so much so that they’re almost non-existent. And thats in people who as of 2009, had been diagnosed at least 30 years ago!
I enthusiastically second the recommendation of Robert_Milnes to check out Joshua Levy. I no longer bother going anywhere else RE cure research. If Joshua doesn’t get excited about it, then I don’t get excited (or hopeful) about it!
I found the Glu website (myglu.org) has some interesting charts, but did not see the ones you posted.
I’m one of the dark ages folks, with some complications, but now stable. Encouraged to see how the stats shown in the charts are significant reductions !
My first 20 years they did not test A1c, but best guess is that it was 10-14 during that time, using only one injection/day and eating breads/cereals,etc, on the ‘exchange’ diet. The primary restriction was candy/sweets.
Seems unbelievable now, but they didn’t realize high BG caused the complications. They thought maybe whatever caused attack on pancreas was attacking other organs. That’s what I was told.
Yes, the DCCT was in many ways the beginning of the enlightenment. There is an urban legend (possibly true) that when the first DCCT results were published, the Joslin people were going around wearing buttons that said, “We Told You So.”
