New video on T1D in the New York Times

Type 1 and LADA
41

Please make sure you read all the comments on the site of the video, especially the one from her teacher. It’s amazing to me that people who comment on children and parents dealing with type 1 are ignorant to the fact that we have been trained by doctors, nurses & pediatric specialists on treating it this way. You think we came up with this all on our own? We enjoy sleep deprivation or have some psychiatric issues that makes us enjoy poking & prodding our kids? Thanks for the vote of confidence…

Children can go from 200 to 60 in minutes & cutting down on the “freaking” insulin is not the fix/solution because they are so much more active than most type 2 adult diabetics or those with lada, their numbers ebb and flow much differently.

Jay Cutler, Chicago Bears quartetback, says he checks himself 5+ times during a game (he’s T1). I’m guessing he’s in much better shape than most of us on this site. Is he also over the top? I think he knows his body & does what he needs to do to be at peak performance, which is different regimen than someone else.

Also, I have heard it hypothesized that SIDS may be caused from undiagnosed infants with Type 1. It seems like it could be related if you think about it. So, if there’s a correlation it would mean even more lives have been taken by diabetes.

Again, as an adult your regimen is completely different than a child’s. You are finished growing & hopefully your hormones are in check, not fluctuating like they did when you were younger. Women w/T1 will deal with issues when they go through menopause, men won’t. That’s why most who post don’t have the same issues as this girl. Read up on Type 1 parameters and insulin plans/dosing for children before you assess/judge a type 1 child.

To those who have lived through childhood & didn’t have nighttime checks maybe you should count your blessings.

To the old man with T1 who is ready to die if it’s his time, applause for you, but we’d like our children to make it to an age where they are as comfortable as you are with that.

Of course parents, who are the caretakers of children, are going to be diligent with the care of their own child/children (yes, there are quite a few parents w/more than 1 T1 child). Even if it means being made fun of & listening to “advice” from those who are self proclaimed experts on this subject (and probably everything else in the world).

42

Well said, Sam. I agree with your attitude, and think "sensationalist" videos or reports of that nature will do more harm than good to both the "undereducated public" as well as diabetics and their loved ones. An affected teenager or child who lives is an environment that suggests to them regularly "you could die at any time" will most likely develop an unhealthy relationship to their own illness and body. Maybe even an anxiety disorder. Not a good way to go through life. The thing that helped me most and motivated me to take the best care of my diabetes was through the encouragement of other people with the condition. Practical tips for everyday life as well as an attitude of "I can manage this and still live a good life". A positive and constructive attitude can and will change outcome.

43

+1 X 10

44

Hello Alex's Mom:

With respect you appear to be confusing some issues. The video was designed specifically to raise money for the parents entirely understandable agenda-goal. That said, the simple reduction of insulin will certainly gain the parents something they should never have lost, a full nights sleep, on a very regular basis. Once in a while, fine. Stuart crashes once in a while ok maybe. Or he has a flu bug, yuck. But every single night... that is not a sane healthy method. It is the definition of an excessive approach. What that describes is far beyond "diligent".

Control which seems that tight, the need to test multiple times in the middle of the night, is a severe mistake. Reduce that strangle hold, ease up until you don't have to live in terror through the night, every single night. It's a rational proposal.

When control causes anybody to loose sleep that regularly, daily it's a bad approach. This is a fear of a very specific generation of diabetics/their parents.
Control should never be a noose, theirs definitely seems one.

No "blessings" required. Sleep on the other hand... is.

Merely my opinion, I could surely be mistaken...

45

Kelly Close of Diatribe has an article on the NY Times Opinion piece on striking the balance between conveying the potential "dark side" of T1D and conveying the fact that people with T1D can lead fulfilling, active lives.

http://diatribe.org/our-reaction-new-york-times-midnight-three-and-...

I think she strikes a good balance between respecting the experience of the particular family here and those like them, and the experience of those who, though living with the hardships of the condition, triumph over it and thrive.

Worth reading..though the discussion on this thread has hit many of the same points.

46

I don’t agree with you & have been told by our endo that we need to check our daughter every night because lows happen frequently with her. I have a friend who has a 4 year old & she checks on a similar schedule. Maybe diabetes takes a break for you & yours during the nighttime hours but that’s not usually the case for young children. In fact, it’s amazing that you check during a day more than once but not during a 10-8 hour night…does Stuart stop eating at 4pm? Is he not very active? Again, one person’s diabetes is not another’s just like I said before, heart disease is different for each person so is this. Glad you caught the lows the nights you decided to check on him…yikes if you hadn’t.

47

How often have you identified lows that need correcting in the middle of the night? If the answer is ever, the solution is less basal, not less sleep. We are all equally in-active while sleeping. Basal should never cause crashes without substantial variables like a lot of physical activity. If it is doing so, the person is taking too much-- it really is that simple.



Some people may be more stable and be able to safely drive their numbers lower than others-- and maybe that’s a goal we should all be working toward, but in the meanwhile crashes in the middle of the night are only caused by one thing— too much basal. I suspect your doctor would agree, if they don’t, I would find a different one.

48

I think I’ll stick with the regimen her Endo has prescribed since she went to med school & has seen many caes, not just one or two people, and how they deal with it. I’m not sure I agree that people are inactive during sleep, so you really think diabetes shuts down at night? My 6 yr old runs around the house up until the time she goes to bed. I think most children are pretty active…at least the ones I’m around. They are constantly on the move. Her numbers fluctuate constantly during the day & night because of this, and so do the other kids I know because their parents same the same thing.

49

By all means... They're the doctor. However if you're heading off major hypoglycemia in the middle of the night I highly recommend you make an appointment with them immediately to explain that situation to a doctor...

50

Well, I don’t agree. My basal is as close to perfect as it can be. I’m generally a flatliner 24x7…until I’m not!

For no discernable reason, my BG can drop (or rise) significantly, 80 points or more, in a matter of minutes. This can, and has, happened at anytime of the day.

There is no pattern, trust me I’ve tried to find one. My record keeping has been described as impressive, even manical. I’d find a pattern if there was one.

The cause is NOT too much basal, unless of course you subscribe to the simplistic, naive, notion that I should just let my BG run up to 200 or higher at bedtime to prevent the occasional, random Hypo. What about the rest of the day? Oh I know how to fix that, just reduce that basal too, right?

Even with my CGM, I routinely wake twice over night to check my BG.

Without going back and running a query on my database, I’d submit that I catch a low about 25% of the time with my non-symptomatic finger sticks, my CGM catches them about 50% of the time, and the family dog catches them (nightime) the remaining 25% of the time.

Could I skip the night time checks? Sure. Would I survive unharmed if I did? Maybe.

My diabetes is different than yours, yours is different than this young ladies. It really is just that simple.

51

We are all equally in-active while sleeping. Basal should never cause crashes without substantial variables like a lot of physical activity. If it is doing so, the person is taking too much-- it really is that simple.

If your diabetes is that simple, that's great. For most kids (and some of us adults) it's not that simple. During the past month I've been making a concerted effort to adjust my overnight basal rates with the benefit of a pump and CGM. Within the past week, I've still had nights where I've risen by more than 100 points, dropped by more than 100 points, had both my high and low alerts go off during the same night, and stayed stable varying only 20-40 points. This is with no changes in routine, no extra/intense activity from day to day, and the same mealtimes and types of foods each day. I am working closely with an endocrinologist who also has Type 1 and uses a pump and CGM, and he has so far been unable to offer me any suggestions beyond what I've been trying.

Hormones alone have a huge impact on kids and teenagers blood sugar variability. Not to mention that school days are often more highly variable than work days, and parents can't follow their kids around 24/7 to document exactly what they did at recess or in gym class. Parents also don't necessarily know whether their kid is feeling extra stressed or coming down with a stomach bug. Waking up in the middle of the night to check blood sugar levels is the norm for many kids and teenagers with diabetes, not the exception.

52

I didn't see anything "helpless" portrayed in the video. The parents aren't saying diabetes will kill their daughter and that she will never be able to go off and accomplish her dreams as a foregone conclusion, which would be displaying helplessness. They're saying diabetes has the potential to kill their daughter and/or limit her future if they don't take the precautions they are taking (agree with their specific precautions or not). That seems pretty proactive to me, not helpless. Type 1 diabetes is a potentially life-threatening disease, otherwise you and me and everyone else on this site would not be working as hard as we all work to keep it under control.

53

I understand some people for many different reasons have a lot more variability than others.

That doesn't change my perspective that if you or a loved one can't go to bed and sleep throughout the night with total and absolute certainty that your basal dose isn't going to kill you while you sleep--- then you are taking too much of it.... even if taking less means that you might not be able to achieve the degree of overall control that you might otherwise like to.

54

Thank you for sharing Brboyer. I appreciate you giving us a glimpse of what it’s like for you. Everyone is different and hence difference ways of managing it.

55

Well put! Exactly right.

56

But your perspective is based upon your personal experience and fails to take into account how very different T1 can be for others. Like Jen, I've experienced a drop of 100 points overnight on more than one occasion. It can happen with a basal that will be fine for week after week and then, without a change in activity or diet, I'll experience a drop like that. For me, it has a lot to do with my hormones, including my ever-changing thyroid levels. Simply saying "lower the basal" doesn't completely resolve the problem. My last A1C was 6.5, so I don't run nearly as low as others on TuD, such as you. I don't have kids, but if a parent of a T1 knows it's possible their child might drop 100 points overnight, even if they haven't for weeks on end, I could see where they might feel compelled to check. That being said, I think it's also a good reason all T1s should have affordable access to a CGM.

57

Sam, my former boss was diagnosed in adulthood (30yrs old). And when he found out my daughter was diagnosed at 4 he shook his head and said I can’t imagine. He tests a couple times a day (maybe) and sometimes boluses depending on his number. It’s completely different for children with T1. Your pancreas was working, at least working a little bit, and kept you alive into adulthood. Not the case for children, their growth spurts, hormones and activity is not what an adult deals with. That’s why their growth is analyzed closely by their doctor and eye sight and they are watched for other autoimmune diseases. I would encourage you to research it a little bit. There are videos upon videos of kids and 20-somethings who have had dealt with this since childhood and its a whole different ballgame. It’s the norm for us.

58

then you should be taking less basal and doing more corrections as necessary. If BG can plummet from basal alone w/o activity-- whether you’re a child, a menopausal woman, a pubescent teenage boy, whatever-- you’re taking too much… That may mean different things to different people but it’s an inescapable conclusion and I’m afraid I can’t be convinced otherwise.



No logical basis can be made that a basal dose so large as to cause ones bg to plummet (on occasion) is not too much. I understand everyone’s condition is different. That doesn’t change the obvious facts as I see them.

59

Unbelievable that you seem incapable of hearing what people are saying. Yes, after it happens, I'll adjust the basal. But if week after week after week I have no drop and no reason to lower the basal, ummmmm how would I know I need to do so. Then again, I'm sure you won't understand that because you apparently have no interest in understanding anyone else's experience.

EDIT to add that it's the very fact of changing hormone levels that make it impossible to say there's one set basal that should keep one from going low forevermore. As the hormones change, the basal needs change and one can't know exactly what the needed basal change will be in advance.
60

Wholeheartedly agree! We are in the process of getting the G4. It seems strange to be excited about getting another device to stick in her little body but hoping it will be a good compliment to her Omnipod.