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Type 1 in children

C

Colhammo

Member
Messages
16
Hi guys. Just wondering about anyone’s opinion on the following:
My daughter aged 12 yrs went to the GP last week as she had been complaining of increased thirst, blurry vision, more toilet visits, tingling in legs.
GP did a blood test & found a reading of 27 but 0 ketones in urine. Admitted to hospital straight away.
No fasting blood tests carried out in hospital, a hbA1c reading of 88 discovered, however I’ve discovered hbA1c tests shouldn’t be used on children!
She’s been diagnosed Type 1 however we, as parents need a 2nd opinion.
Any thoughts or advice on this will be gratefully appreciated.
Many thanks
Colin
 
You are understandably hoping for the best but I think you should prepare for some bad news. It all sounds like diabetes and I think the hospital knows more about it than you or me. I expect your daughter will be put on insulin.
 
Hi, thanks for replying. We are ready for bad news and are currently moving on as instructed, however with us finding conflicting information and the correct procedures not carried out in hospital, we feel a second opinion should be carried out.
Why no fasting blood test?
Why use a hbA1c test on a child when this procedure shouldn’t be used on a child?
I’m sure you can understand our concerns.
Thanks for your input and any other Will be gratefully appreciated.
 
When the GP took a blood test reading of 27, was that a finger prick test? If not, what was it?
27 is high, but all depends on what she last ate and when.
 
Hi, if you change the title of your question and pop it in the type 1 or children areas you will get more support. I know that the hba1c gives an average reading over the last few months. Perhaps it was just to get a snapshot of how long her figures/readings have been high.
 
Hi @Colhammo , welcome to the forum.
Hba1c tests are used on children all the time, and have been used on children for decades.

27 mmol/l is a dangerously high glucose level, which won't be seen in non-diabetics. She also had all the symptoms. Not everyone develops ketones easily, no ketones in her urine is very good, as a diabetes diagnosis is enough to deal with without also having to deal with ketoacisis.

She'll be having fasting glucose tests every day from now on, and multiple daily non-fasting glucose tests too.

If a 12 year old presents with symptoms, a high hba1c and very high blood glucose, type 1 is the only logical conclusion, I'm sorry.
It really sounds like they're doing exactly the right thing at the moment.

Please have a read of this thread, I think you'll find it very helpful!
https://www.diabetes.co.uk/forum/threads/5-things-any-newly-diagnosed-type-1-should-know.175425/

Wish you and your daughter all the best, it takes time to take it all in!
 
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
 
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.
 
Hi, yes it was a finger prick test. She had eaten cereal in the morning, toast at break time then a butty, grapes and a biscuit at lunch time. Just very concerned that she didn’t have a fasting blood test in hospital, they’ve used a hb1ac test which shouldn’t be used to diagnose in kids, 0 ketones in urine, no weight loss, not sure if we’ve had a GAD auto antibodies test. Can you understand my concerns?
 
Colhammo said:
ust very concerned that she didn’t have a fasting blood test in hospital
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She didn't come in fasted so they couldn't do a fasting blood test.
Didn't they check her blood glucose the next morning as well? That would be the first instance they could do a fasting test.
Colhammo said:
they’ve used a hb1ac test which shouldn’t be used to diagnose in kids
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What I can find on this is that hba1c tests for screening children on diabetes might miss some diabetic children. Your child had a very much positive result on their hba1c test, so this is not applicable.
Colhammo said:
not sure if we’ve had a GAD auto antibodies test.
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It takes time for that one to come back, it's not a quick test.
There is also no other likely diagnosis than T1 in a 12 year old with very high BG, a high hba1c and symptoms.

Treating is the first call of order with a blood glucose of 27, regardless of the cause, this is an emergency situation!
Everything else can wait.
Colhammo said:
0 ketones in urine, no weight loss
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Not everyone develops ketones, especially early on, as we tend to still produce some insulin at that point.
Weight loss is often seen but not always, especially if caught early.

I really want to ask you to go with the T1 diagnosis for now and focus on that.
There's a lot of new things to be learned for both your daughter and yourself.
 
The spot blood glucose check (random test cutoff is 11mmol/l) and HbA1c value (pre-diabetic 42mmol/mol, diabetic 48mmol/mol) point to type 1 diabetes.
C-peptide test would confirm insulin production is low and antibodies test is likely to confirm from a number of potential ones which are causing the problem.
I suspect they will start your daughter on insulin in the meantime - which sounds like the right and safe approach based on the information you have listed.

The medical team and you will not want to risk DKA ... lack of ketones at a particular point in time would not prevent this. I believe high blood glucose and dehydration is sufficient to cause major problems.
 
Hello and I am sorry to hear your girl is unwell.
The symptoms and the test show she's lost insulin function. You could ask for a C-peptide test (level of insulin) and GaaD (antibodies produced in the autoimiinue reaction) to confirm.
Ketones are a bit of a red herring. I rarely have ketoacidosis even with very high sugars.
Taking insulin should make her feel better and that will be the proof of the diagnosis I suspect.
Take this one day at a time. You will be sad and worried for her but when she feels better she will likely just want to get on with her life. She is lucky to have parents to help her with that and to make sure she gets the best tech that is now available.
Come and ask here again when you've got your head around this.
 
 
I will be exploring every possible avenue before I accept the diagnosis. So many unanswered questions, alarming rate of misdiagnosed cases…. I’ll be on to our GP 1st thing in the morning. Thanks everyone
 
Colhammo said:
I will be exploring every possible avenue before I accept the diagnosis. So many unanswered questions, alarming rate of misdiagnosed cases…. I’ll be on to our GP 1st thing in the morning. Thanks everyone
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Even if you don't fully accept it please make sure you let them treat your daughter whilst you are investigating - she needs her blood sugar level brought down.

Both the finger prick result (even after eating a lot of high sugar stuff) and HbA1c (and average over 3 months) are a lot higher than someone who is not diabetic
 
 
Why do you think a HbA1c shouldn't be used? Where
Colhammo said:
I will be exploring every possible avenue before I accept the diagnosis. So many unanswered questions, alarming rate of misdiagnosed cases…. I’ll be on to our GP 1st thing in the morning. Thanks everyone
Click to expand...
Please, accept treatment. This truly is a life or death situation.
 
Colhammo said:
alarming rate of misdiagnosed cases
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I don't think there's an alarming rate of children misdiagnosed as T1. This is usually a very straight forward diagnosis.
Colhammo said:
I’ll be on to our GP 1st thing in the morning.
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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.
Colhammo said:
I will be exploring every possible avenue before I accept the diagnosis.
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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.
 
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?
 
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