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Worried about 3 year old

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

mazzaroo

New Member
Hi everyone.
I am a parent of a bubbly toddler. Our family history of diabetes type 1 is strong. My mother and 2 cousins on the same side.
My mother was late onset (triggered by pregnancy). As I was growing up my mothers control was poor and the smell of ketones is something that is very familiar to me.
My daughter, 3, has been smelling strongly of ketones the last few days at the end of the day (gone by the morning). She is not presenting with any of the typical concerning symptoms (weight loss, thirst, weeing). The only things that are slightly unusual is she is a little more fatigued, she says shes seeing "red spots sprinkling down" at nighttime and has persistent vaginal soreness and an increased appetite (She is eating for England).
Urine analysis at home is normal - but she does have ascorbic acid in urine which I know can mess with readings.
If I was to go with my gut instinct, I think I am picking up on pre diabetes (Stage 2 with partial destruction of B cells before symptomatic and diagnosis diabetes occurs). I believe she may be building up blood glucose during the day with some glucose intolerance, then recovering overnight as her insulin production catches up with demand. The alternative is that the ketones smell (which believe me - is obvious - think pear cider in a nail salon) were just a random occurrence and all is fine.
We are going to the GP today for a random check on glucose monitor and to book in fasting blood levels. My question - has anyone experienced this build up that they noticed prior to becoming ill and ultimately diagnosed? I realise pre diabetes for type 1 is a fairly new area of research and I believe most GPs probably arent particularly aware of it. I would love to get her tested for antibodies to put my mind at rest but I expect this will be quite difficult to get access to.
 
I hope the GP can give you some clarity. It’s worth asking about antibody tests but I don’t know if they’re done routinely. We’re part of the BOX study so have all been tested after my kid was diagnosed and there are various ongoing tests as part of the research.

I don’t think there needs to be a fasting blood test as the most useful test if the HbA1C which looks at the last 3 months but the GP should be able to advise. My kid was older (8) but the thirst was VERY clear before anything else.
 
I hope the GP can give you some clarity. It’s worth asking about antibody tests but I don’t know if they’re done routinely. We’re part of the BOX study so have all been tested after my kid was diagnosed and there are various ongoing tests as part of the research.

I don’t think there needs to be a fasting blood test as the most useful test if the HbA1C which looks at the last 3 months but the GP should be able to advise. My kid was older (8) but the thirst was VERY clear before anything else.
I don't think I would be thinking anything of this or even noticing a possible issue if I wasn't akin to a ketone trained bloodhound lol
Growing up, my mother was always poorly. I was basically her blood glucose detector - via my nose. I cannot shake that I know what I have smelled. I am wondering whether there are other reasons the smell of ketones might be on breath
 
My daughter stank of ketones for at least a month before she was diagnosed. It was all the time though, never faded. If you’re going to ask for her to be tested for diabetes, make sure they do a finger prick blood test, not a urine dip. If the result is anywhere above normal, ask to be referred to a hospital diabetes team for more thorough testing. If the result is normal then it’s probably nothing to worry about.

When my daughter was diagnosed they did a urine dip which was apparently normal, and the GP clearly thought I was being neurotic but reluctantly agreed to do fasting blood tests. Which is correct for diagnosing type 2 but not type 1. We had to wait a few days to get that, by which time she was very sick indeed and all the tests were through the roof with sugar and ketones. A finger prick test is much more accurate than urine so make sure that’s what you get. Good luck, I hope it turns out to be nothing.
 
@mazzaroo you may wish to consider enrolling your child for the ELSA study which was recently posted about in our news section by @Amity Island . That may help to reassure or prepare you as it aims to predict your child's risk of developing Type 1 in the future, and potentially link to prevention studies/treatments if she is at risk. (And would give you access to the antibody testing you said you would like to have.)
 
Pleased to report her prick test was absolutely normal. So pleased. I guess the ketone breath will forever be a mystery! If anything changes I will return to this thread and update but I am very reassured for now
Glad you have some reassurance
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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