Someone started a petition for testing children for type 1 when they have their doctor's visit. So many children are tested late, and serious complications can result. This is a good first step. I signed the petition on 2/7/14. More than 500 people have signed the petition.
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I just signed.
I signed and donated. Richard, thank you for the post.
Sarah
Signed and donated.
Come on, everyone, please sign and donate! Testing early can save lives and prevent/minimize complications.
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I have mixed feelings on this one. While we hear people with stories about misdiagnosis screening can have two sides. It may catch cases of T1 that otherwise go undetected, but it may also cause harm by raising red flags and having kids go through needless procedures and treatments with their own harms. It isn't like glucose testing is not already a standard blood chemistry test recommended for children that includes the glucose test. This test along with the CBC are a first line screen given to many children already. So the only ones affected by the added screen would be those who are not deemed sick enough to warrant direct action. And herein lies the rub, all those in immediate danger would seem to be already covered by the system, but those in danger look "ok" but are not.
So when we try to deal with those that look "ok" we end up with trouble. Of those that look "ok" will only be a few that are really in danger. How many? Let's just say 30 in 100,000 (that is the T1 rate among age < 10). That means that of the 100,000 we test, 999,970 children will be tested needlessly. Further, some may have a false positive (maybe cause their fingers had candy on them) or perhaps because they are "sick" and ate a bunch of candy. Whatever. Let's say that 1 in 100 get a higher than expected reading. So what happens? That child get's more diagnosis and treatment, maybe even a trip to the emergency room. That is fine you say, but how many times does that happen? In screening of 100,000 we may or may not find 30 kids with T1 who would otherwise be missed, but then also send nearly 10,000 kids for further tests and diagnosis and even ER visits. This is what is sometimes called a "moral hazard."
The bottom line, ineffective screens can do more (perhaps much more) harm than good. Without a good evidence base on screened populations and screening effectiveness (both true positive and false positive rates) then screening may find fewer missed T1s than we though and needless expose that vast population of kids to harm waste significant resources.
I won't sign until I see some evidence that glucose testing actually detects T1 in kids that don't warrant a blood chemistry test already. I also want to know that with the threshold given, how many kids that are given the test will be falsely identified as potentially T1 and then be given unneeded diagnosis, treatment and rides in an ambulance to the ER.
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Brian, do you post on Facebook? Have you joined some of the support groups for parents of T1 kids? There are so many instances where a doctor has not tested children's BG and then, days or weeks later, the children were rushed to the ER and tested there. Those BG's are sometimes greater than 1000, and DKA is present. There is one child I read about last week who had severe brain damage. The little girl may not survive. If you read about those cases I think you may have a different opinion. A few detections of T1 out of 10,000 certainly makes it worth doing the tests. I was diagnosed as a six year old, and I had lost much weight and was not eating anything, just water. There were three doctors who did not do any testing. A fourth doctor did test, and I was rushed to the ER. If my parents had given up, and there was no fourth doctor, I would not be here today. So I identify very closely to this situation. I am obviously biased, but so are the parents of T1 kids.
I couldn't agree more with you Richard. This is not "screening" per say. It's running the bg test when the child presents other symptoms.
Here is a link to the story you were referring to. http://instagram.com/p/yygY21sAeX/
This is the 21st century. This poor little girl should NOT be in this situation.
Thanks Sarah, I was about to find and post this story I'm glad you did so.
Ironically, when I was 9 years old, I presented with the same symptoms. I fell into a deep coma only to wake 3 days later.
This is something that I am extremely passionate about. Thank you so much for bringing this topic to our community.
I am so glad you survived and are with us today! I must have been close to a coma, so weak It was hard to walk. That was after three doctors did not recognize my symptoms, and no testing was done. that was in the 1940s but even now, in the 21'st century, there are doctors who do not recognize the classic symptoms of type 1 diabetes. A required test when illness is present could save many lives.
If you talk with parents of kids with Type 1, or people who were diagnosed as kids, you'll find that it's not uncommon for parents to show up at the doctor and to be told that it's a virus and sent home. Then a few days later they end up in the ER with life-threatening DKA. These are kids who have only been sick for days or at most a few weeks, so I don't think most doctors would order a bunch of blood tests for them.
I may be wrong, but any kid showing a blood sugar high enough to be sent to the ER ... probably should be sent to the ER to have diabetes ruled out, shouldn't they? A doctor is not going to send a kid with a blood sugar of 200 to the ER, but a kid with a blood sugar of 400 or HI probably should be checked out even if it ends up being something other than diabetes.
Yes Jen, you are correct, on all counts. Thanks!
i just Sign it & donated to.
I agree with @Brian_BSC on this completely.
However, I am curious to hear from those with different perspectives. Did anyone involved with a juvenile onset t1 diabetes case feel that the system somehow failed them and didn’t detect their illness in a timely fashion? Or as soon as realistically possible? Do some of you feel like what is being discussed here would have improved your situation?
My frustration is almost entirely the opposite where I feel he conclusion that I was an adult onset t1 was pretty much rushed to…
for me it will have. it took 2 doctors to find out i had t1. 1st one did not test. 2st one did nothing. my mom had to take me to the er for them to run tests to find out i was a t1. & we have a new doctor so knows a lot more about t1.
My diagnosis went something like this:
Me: my blood sugar is 400 and I know that’s not normal.
Doc: you have type 2 diabetes, I want you to walk strait across the office to the CDE’s office and then to the lab for a blood draw for lab tests.
CDE: we have a lot to talk about. In all likelihood you have type 1 diabetes and will need to be on insulin for the rest of your life. Here’s how to test your blood sugar. In the meanwhile let me use up the rest of this hour by showing you rubber models of various foods to teach you how to eat. Also, you need to brush your teeth every day (which pretty much pissed me off because I was a highly educated professional who didn’t really need to be taught to brush my teeth.)
Later that night doc calls: we got your labs back, we think you have Type 1 diabetes… I want you to meet CDE again tomorrow and learn how to inject insulin.
I was certain my life was over. I was absolutely positive I wouldn’t be allowed to continue doing my job while taking insulin. I literally thought about “refusing treatment” thinking I might be better off and providing better for my family to work as much as I could until I keeled over dead instead of taking insulin and being told I couldn’t do my job because of it… Luckily that all turned out to be pure BS thinking, I take insulin every day, I have excellent control, by doctor helps me with that and documents my excellent control, I still have the same job except have earned several promotions since then.
The rest is history, then afrezza came along and changed my life again, and now honestly diabetes plays a very small part in my life at all. The vast majority of the role diabetes plays in my life nowadays pertains to the discussions i participate in on this forum…
my children didn’t get these tests when they were little throwing up and in the doc’s office, and it was never recommended either. thank god they don’t have diabetes. my children are currently 20 and 19.
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There isn’t a fixed guideline but this panel is a routine part of an annual exam and if you arrive at the ER this is routinely part of the first round of tests that would likely be given. My point is that a glucose test is already part of what these doctors should “routinely” do, yet they don’t. Asking them to do a separate glucose and/or urine test isn’t going to add any value, will be rejected by the system as “duplicative” and may actually do more harm than good.
oh, i get what you’re saying.
I think the link is talking about kids who go to a family doctor, not kids who go to emergency. I don’t know that a family doctor would order a bunch of blood tests if they think the kid just has a virus and has only been feeling bad for at most a week or two.