I’m not sure urine testing at well checkups increases the catch of kids with T1D, just based on the odds (say 1 in 300 kids will develop T1D, and the odds they are in early stages of the disease – maybe the first few weeks when symptoms aren’t as obvious – near their birthday is 1/24, so you’re talking about testing 7,200 kids to catch one kid, and then you have to weigh the odds that you’re catching kids who wouldn’t otherwise be brought in relatively early anyways, so probably you’re looking at running 10,000 pee checks to catch 1 kid who might otherwise be missed till later) .
But I do think urine tests should be around and more standard in peds offices – i.e. when people are sick with flulike symptoms or the standard symptoms of diabetes, as well as the typical UTI symptoms. Probably taking it out of the normal arsenal of tests used at well-checkups has the ancillary effect of making it less at the forefront of the doctor’s mind when they decide whether to run tests.
If a kid comes in for a normal checkup with no complaints, there wouldn’t be much of a reason to run it. But in several examples given on our forum, I am just shocked that they wouldn’t do something like that. The symptoms described were typical. They were textbook examples.
Since some of the pediatricians were not able to connect the dots, what is the choice? Either making it a part of every exam, or trusting the pediatricians to make the right choice. We’ve already seen where the second option leads - extra days of suffering and possibly damage to the body.
I would just like very much to make a simple statement for pediatricians which would eliminate a lot of this type of thing:
If you see excessive thirst and urination, weight loss, lethargy, flu-like symptoms, no energy, vomiting - do a BG test.
If there is not already some guideline like that, what would it take to make make that statement widely known in some pediatrician publication?
I am guessing these already are the guidelines (well for urine checks) but that some doctors are just not following them because 99 times out of 100 that test would be negative and so they’ve developed a cognitive bias.
That said, I am honestly *shocked that others’ practitioners didn’t pick up these symptoms. I mean the nurse on the phone was already very worried based on my son’s symptoms. She just does intake and she hadn’t even examined him.
I don’t need tests all the time. I just need informed and educated doctors that know symptoms of easy to diagnose diseases… And if warranted based on symptoms… Get the tests done.
No parent should ever diagnose their children with diseases prior to the child’s own pediatrician… After multiple visits…
it is not that simple, though. I think it is rare when the parents come to the visit and list “unexplained weight loss, sudden change in behavior at school or home, loss of energy, large increase in eating or drinking, frequent urination, and unusual bedwetting” as the reason why they are there. They might give one or two reasons.
For me, I took my kid in because of the extreme weight loss, and I also mentioned lack of energy and feeling sick. To see the other symptoms, they would have needed to ask. That’s why I agree with Eric – there should be more cases when you get tested.
I don’t see the same calculation as you, though. In our case, we had symptoms going back 5-7 months, and we didn’t connect the dots: lack of energy, change in behavior, increased drinking and eating, etc. I think that if your A1c at diagnosis is high, it means that you likely were diabetic for 3 months or more – I bet that is true for a significant percentage of the kids (and adults). For instance, from her sad diagnosis story, @CatLady must have been diabetic for a while too: she was at 10.5% when diagnosed.
In my idealized world, blood glucose testing (see Hemocue link posted earlier in thread and Abbott’s i-stat) would be routine at yearly exams – for children and adults alike.
Research has shown that there is a period of dysglycemia long before diagnosis of nearly every form of diabetes. This period can result in complications which range from subclinical to severe. Small, incremental increases could be caught early.
IMHO, urine testing is severely limited by the renal threshold. Therefore, it is ineffective in the prediabetic period. Thus, it should be reserved for the narrowing of a MODY 3 diagnosis.
Routine blood glucose testing has the potential to prevent needless quality of life issues. I would strenuously argue that the costs would be more than offset by reductions in devastating complications.
FMI: Staging Presymptomatic Type 1 Diabetes: A Scientific Statement of JDRF, the Endocrine Society, and the American Diabetes Association by Richard A. Insel et al; Diabetes Care 2015 Oct; 38(10): 1964-1974. https://doi.org/10.2337/dc15-1419
For a parent of an older child I can see how increased thirst and more urinatiin would be hard to spot… Since they are independent once they are older than… Say…6 -10 years old and they do these things without ever being observed or noticed. But parents of babies or toddlers DEFINITELY see these symptoms because they are actively changing diapers…Getting the drinks, etc.
Different symptoms appear (or are observed) differently at the child’s age… But the doctor should be able to connect the dots regardless imho…
In hindsight, that great teacher, I realized that I’d been having cognitive difficulties for quite a while and just didn’t feel right–very unspecific. I attributed it to hot weather, since I have never done well in heat, and the stress of trying to get the travel and accommodations planned for our far-flung family to attend our daughter’s overseas wedding. My husband says he asked me if I was peeing more–I didn’t think so at the time but yes, I was. I was in denial–I was not going to watch my daughter get married from a hospital room. Ha! Methinks the person on her way to DKA can’t assess her own situation very well!!
Wow, I didn’t realize your son had those symptoms for so long! My impression was that it is more typical for a child to be under the weather for a month or two before diagnosis.
I guess I was assuming that if these symptoms persisted for a month or two, most parents would have taken their kids into the pediatrician already specifically to address those complaints. But perhaps that’s overly optimistic.I wonder what the average A1C at diagnosis is for kids with T1D nowadays.
The thing is that kids don’t get blood tests once a year – a least mine haven’t. Both get one blood test at age 1 to test for lead and anemia. Otherwise, there is a long stretch of childhood where we mostly leave them alone. So it would be a big change in guidelines to have routine blood draws yearly. And it would require a lot of changes in workflow. Our peds office doesn’t have a blood draw lab – they send out test orders as needed so adding a blood test for every kid would likely tax their system. And if you think kids hate shots, wait until you have to restrain one having a blood draw. It’s pretty bad. I mean, our older son is at elevated risk so he’s enrolled in TrialNet, but the testing kit has been sitting up on our counter for 3 months because it’s just such an unpleasant task.
Finger pricks are much less invasive and I’d support a yearly finger prick, but someone on this thread mentioned that doctor’s can’t use typical meters for diagnostic purposes, for some bureaucratic or regulatory reasons? That seems like where the possible change needs to occur.
