Type 1 in children

[Colhammo]

I don't think there's an alarming rate of children misdiagnosed as T1. This is usually a very straight forward diagnosis.

GP's aren't very knowledgable on T1 as a rule, which is why most of us are treated by a specialised team of endocrinologists and diabetes specialist nurses, especially when underage.
Other often seen members on those teams are dieticians and (child) psychologists.
Your GP is likely to refer you back to the hospital, where there is more knowledge on the subject.

Would you like to tell us a bit more on your feelings?
Hearing your child has a serious condition must be very, very hard on a parent, and it brings along a form of grief. Anger, denial, depression, bargaining are all part of grief.
Have you asked yourself why you are not accepting this diagnosis and are looking for however small possibilities it's wrong?
Regardless of the diagnosis, those blood sugars need to come down first and foremost, and insulin is the way to do that. Finding out the exact root of the high blood glucose comes second place.

 

[Colhammo]

I agree. They dropped from 27 to anything from 3 to 12 whilst in hospital during the 3 days and on insulin. I just need concrete evidence that the pancreas is producing little if no insulin at all then I can accept the diagnosis. How can this be obtained?

 

[Colhammo]

Oh absolutely. We wouldn’t changed anything before being told to. She’s having a Dexcom fitted tomorrow. I just feel I’ve got to explore every avenue. Why does the web say hbA1c shouldn’t be used for children?

Hi. I know of no reason why an HBA1C test can't be used with children as it's a non-invasive test apart from taking blood. A fasting test is of little use as a diagnostic but the HBA1C is very reliable. I'm afraid your child is T1 - sorry.

 

[Colhammo]

Oh absolutely. We wouldn’t changed anything before being told to. She’s having a Dexcom fitted tomorrow. I just feel I’ve got to explore every avenue. Why does the web say hbA1c shouldn’t be used for children?

 

[Colhammo]

This is the reason why I’m questioning hbA1c

 

[Colhammo]

Oh absolutely. We wouldn’t changed anything before being told to. She’s having a Dexcom fitted tomorrow. I just feel I’ve got to explore every avenue. Why does the web say hbA1c shouldn’t be used for children?

With numbers like that, there's not exactly a way around it, and a second opinion won't change the labs. They're truly saving your child's life.

It's not easy, but she'll have your support. And you'll have the people on here who'll help.
Hugs,
Jo

 

[Colhammo]

Jo, I agree the outlook doesn’t look good, I appreciate everyone is doing as much as they can but as I’ve said I need something more concrete. I need to know the pancreas isn’t doing it’s job properly. We go forward doing as instructed but I can’t give up the hope yet.

 

[Antje77]

I just need concrete evidence that the pancreas is producing little if no insulin at all then I can accept the diagnosis. How can this be obtained?

It's early days, so even with T1 the pancreas might produce some insulin.
But the test for the amount of insulin produced is called a C-peptide test, you can certainly ask for it!

She’s having a Dexcom fitted tomorrow.

Wonderful!

We go forward doing as instructed but I can’t give up the hope yet.

I appreciate your feelings on that.
However, your daughter might be better off with a more positive outlook and taking it in your stride, however hard this is.
Type 1 isn't a death sentence in any way, and phrases like 'giving up hope' may send unwanted signals to your daughter, who is the one who has to live with the condition.

There are plenty of people who have lived happily with T1 for 40, 50, 70 years, and most of the time without technology like Dexcom or even simple glucose meters.
Just let us know if you want to hear from those people, it might ease your mind a bit!

 

[Rokaab]

This is the reason why I’m questioning hbA1c

It may have been the combination of finger prick blood test(s) and HbA1c, rather than just the HbA1c.

The finger prick test pretty much said it all on its own anyway, I suspect a number of finger prick tests were done and these would've confirmed it was much higher than it should've been.

Do note that I believe in newly diagnose Type1's that insulin production can come and go a bit for a while so there may still be some insulin production for a while (there were no such tests when I was diagnosed, I think the HbA1c was pretty new at that point so dunno if I got one of those either)

 

[JoKalsbeek]

I agree. They dropped from 27 to anything from 3 to 12 whilst in hospital during the 3 days and on insulin. I just need concrete evidence that the pancreas is producing little if no insulin at all then I can accept the diagnosis. How can this be obtained?

A child with blood sugars that high is per definition, not producing enough insulin, or she wouldn't be that high. There is no other possible reason. Misdiagnoses happen in adults, yes, because there's T1, T2, T3c, GD, Mody and LADA muddying the waters. But not in kids; there's just T1. C-peptide tests will be whatever other evidence you want, but those high blood sugars don't just happen for a variety of reasons. There's just one reason that drives them up to this extent. Type 1. I'm sorry, I really am, but this is your new reality.

Please don't let your kid pick up on your obvious desperation here. They'll have a hard enough time adjusting as it is, and you wouldn't want her to feel like she's a disappointment or less-than... Because she's not. Odds are she'll adjust in no time at all, if you just cheer her on. And live a long and otherwise healthy life....

That dexcom is a lifesaver. Educate yourself on T1, it's more useful than looking for ways out of the inevitable, for you and your child. Again, I am sorry.
Jo

 

[Squire Fulwood]

. Can you understand my concerns?

Yes, I am willing to bet that everyone on this site understands your concerns but you came here for a second opinion. I am sorry that it is not more favourable.

 

[EllieM]

As others have already said, T1 in children can get very serious very early. Lack of diagnosis used to regularly lead to DKA and death, so the whole diagnostic system has got better at catching T1 earlier in children. It's a good thing that she didn't have ketones on diagnosis.

I was diagnosed very early 51 years ago because my T1 mother had almost died at her diagnosis in her early 20s. She immediately noticed my extra thirst and sent me for blood tests. No glucometers in those day, just a chemistry experiment with urine, ( and I would have killed to have access to a cgm during my two successful T1 pregnancies in the 1990s). But I'm still alive and well and not expecting to have my lifespan or quality of life significantly curtailed and the opportunities for your daughter are even better. There are a few careers that are out (astronaut anyone?) but only a few, and T1 is one of the few illnesses where the control of the disease is more in the hands of the patient than the doctor. By the time she's adult she'll know more than her GP and probably than her specialist, at least as how to manage her own reaction to food and insulin.

But not in kids; there's just T1. C-peptide tests will be whatever other evidence you want, but those high blood sugars don't just happen for a variety of reasons. There's just one reason that drives them up to this extent. Type 1. I'm sorry, I really am, but this is your new reality.

I agree, but strictly speaking some (obese) children now get T2. That's more of a gradual process though.

I personally can't see how the T1 diagnosis can be wrong, I've never heard of a misdiagnosed T1 child.

 

[In Response]

@Colhammo Sorry to read about your daughter's symptoms and likely diagnosis.
Reading the screenshots you quote about not using HbA1C to diagnose diabetes in children. This does not say that the test should not be used but that the test shouldn't be used for diagnosis.
I suspect (although I am not a doctor), this is because diabetes symptoms come on very quickly for children as the insulin producing cells are killed much quicker than with adults. Therefore, a test which provides an average over the last 3 months may miss a diagnosis. This is different to a HBA1C misdiagnosing diabetes.

Even after eating a bowl of cereal, a healthy pancreas would be able to produce enough insulin to bring her blood sugars down to lower than 27. A healthy pancreas would not see double figures. A fasting test is not needed when levels are this high.

Diabetes is scary but the statistics that are available about complications, lifespan, etc. are based on historic data. Data from the times when we did not have fast acting insulin, when blood sugar tests were taken from urine, when technology did not include CGMs and insulin pumps. I am confident with my future with diabetes because all these things are available now and I expect more to become available over my life.

People with Type 1 diabetes are competing in the Olympics, playing football and rugby for their country, performing in Internationally renowned bands, traveling the world, ...

Type 1 diabetes should not hold your daughter back (although misconceptions about it may) and, if managed, should not lead to further health problems.