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Symptoms prior to diagnosis?

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

Twitchy

Well-Known Member
Relationship to Diabetes
Type 1
Hi all,

A friend at school's kid has been unwell for a little while - some of the symptoms sound very like diabetes but before causing undue concern I was wondering if I could check with you guys? This kid has been getting really, really tired, falling asleep a lot, thirsty, peeing a lot (so far so textbook I guess), doesn't put weight on (but equally there's not been a sharp loss either) has been sick a few times & their breath is smelly in the morning... apparently she's taken the kid to the docs & they took blood for testing but she doesn't think they did a finger prick test - I'm wondering whether the doc might have done & just not said anything if it was normal, or whether (thinking of some of the awful diagnosis stories on here) they just have one of the too many poo gps out there?!... I don't want to meddle but if the kid is diabetic they'll need to get sorted & quick!

Any thoughts?... thanks in anticipation for your help!
 
We took our daughter to the docs with most of the symptoms you wrote about, and got told she had a viral infection, she got worse and we took her to the local hospital, took bloods, and got told again it was a virus. After another 2 days, we took her back to the doctors and asked for her to be checked for diabetes. The doctor (a locum) said "What qualify's you to say she is diabetic?" but called the nurse in to check her anyway. Next thing on way to hospital DKA.
I'd have the kid back and ASK for a diabetes test just to be on the safe side.
 
Thanks - I've already offered to take in to school this afternoon a pot of ketostix when I pick up my lad, but I'm not certain at what stage ketones would be present - I just wish their blinking doc had done a finger prick test - think whatever happens this pm I'll strongly recommend she goes straight back & gets the doc to do one today! 😱 Hope the kid's ok...
 
My son's symptoms did come on more slowly than most, but lost a dramatic amount of weight, drank and pee'd for England, had dry cracked lips, and came in and slept every afternoon (he was aged 15 so not normal behaviour for him). I suspect diabetes for weeks but couldn't get him to agree to see a doctor. He too had what we thought was a sickness bug about 2 weeks before diagnosis, and when he stopped being sick he slept almost constantly for 2 days. With hindsight that was very stupid on my part not getting help then, but he wouldn't agree to be seen.

In the end, my daughter, who worked at a Chemists, brought home some ketostix and a blood testing monitor (you can buy them with a small amount of strips in them) and it still took us 2 or 3 days to get him to agree to test. He urine test came up with high ketones (he was something like 2.4 when we got him into hospital) and she later got him to do a blood test, and he was something in the 20's. I rang the GP with these results and was told instantly he needed to be in hospital and on insulin without delay. I said he was refusing to come out of the bathroom, so she said he had two choices, to go there voluntarily or an ambulance would be on it's way. That shocked him out of the bathroom, the rest is just history.....! Would it be too interfering for you to use your own blood testing kit on the child? Maybe not orthodox, but you would get the answer rapidly and the parents not have the possibly unncessary expense of buying a monitor?
 
Thanks Tina! I was wondering about doing a blood test... I'm a bit wary though as I don't know them all that well & although I know I've not got anything nasty, I can totally understand that they might feel a bit odd about it, even with new lancet etc being a given...I think I'm going to see if the kid's mum will get him to pee on a stick at school & then if there are ketones I'm going to strongly strongly recommend she calls her docs & demands to see them immediately - I guess it's that or just tell her to go straight to A&E?? Really torn between not wanting to cause problems by interferring (for all I know there might be any number of other conds with similar symptoms?! :confused:) and being worried as hell that no-one seems to have checked the kid's blood glucose yet -dilemma! I guess at least if there are lots of ketones that's a good indicator that all is definitely not well! Not sure what to say if the ketones are negative though - I wonder if you can be in the early days & not have ketones?? :confused: Yikes...

Thanks for sharing your experience though- it's reassuring me that I'm not being silly to be worried, if that makes sense?! x
 
Not all typical symptoms are always present thats the trouble we had! Smelly breath could mean ketones (depends on smell) but would have assumed weight loss would also be there in my experience. My K had blood tests 5 months before she was Dx - I assumed also for D as I did not know how the tests were made at the time. She presented all the typical signs EXCEPT excessive wee - ing. So if you can I would suggest you help them do a finger prick test and if (as I suspect) it produces a 'high' number you know what happens next (I'd go straight to A&e) Wouldn't bother with ketone sticks, but if I were that parent (with the benefit of hindsight of course) I would go back to the doc and check if a D test had been done and insist one is done.

Really wish I had - would have saved 5 months more damage to K's body:(
 
Well, they did the dipstick test for ketones last night and the result was the first colour block so 'traces'... I've suggested she phone the doc & see if he did actually do a blood glucose check when they were in before & if not get the kid in today for a test - not sure what else I can do really? After all, it might not be diabetes at all...I'm not sure what else apart from lack of insulin or dieting (ie with Atkins) might provoke ketones, so don't know what to suggest apart from persuing a finger prick test...

Did any of your kids feel Less sleepy prior to diagnosis etc after eating, say, a banana?? I'd have thought if the kid is diabetic a snack like that would make them feel worse not better, hence maybe not D?... :confused:
 
Hey Twitchy this is serious stuff. Any symptoms need to be treated by a finger stick test at a GP and then more tests if needed. These are more than a few symptoms. Whilst it could be something else and lets hope it is you cannot play with this.

Close your ears now if you get upset easily ..........

There have been four deaths very recently from non diagnosed diabetes.

This mum needs to get this child back to the GP NOW and get a finger stick test performed. If not then straight to A&E for a test.

If you are a close friend and the mum will take it from you, then test the child yourself with a clean needle obviously (you know that though 🙂) so that if the doc says no not type 1, then you can argue the case if you get a one or two higher readings.

One young lady has just been admitted to hospital after being turned away from GPs after readings in the 20's. She is poorly and may not have survived for much longer.

The best time to test is one and two hours after eating as the pancreas should, if working properly, keep levels are in a nice place, if they are not right then there could be a problem.

Lets hope it is as simple as a urine infection but you cannot muck around with this just in case.

When I say 'you' I obviously don't me you Twitchy. I mean the powers that be who seem to be pretty useless in some places.

Please tell you friend to not delay. I have my fingers crossed for something else.
 
Thanks Adrienne - no offense taken! I'm really worried about this situation - i don't know the mum that well, but one of the first things I said was to offer to use a spare meter & new lancets etc & do a test (she looked quite horrified and declined!!)...every time I see her I'm advising her to get to the docs & get him tested, whilst trying not to freak her out totally- it's so hard to find the right way to say "GET HIM TESTED - NOW!!" without sounding like a total loony! :( I've read a lot of awful diagnosis stories on here before so this is really worrying me ...I myself would not have survived my GP's nonchalance as a baby if mum hadn't been the strong character she was - and after years of varying qualities of care I don't trust docs by default now... unfortunately every time I mention it she seems to be trusting that they have already taken blood for tests so what difference would a finger prick make - and I'm finding it quite hard to explain without alienating her completely. So, so worried!! I had hoped if it is D that he'd show lots of ketones & she'd get him straight to the docs - when she told me today the strip showed traces for ketones I said if it was my kid I'd be demanding a finger prick test now - not sure what else I can do? :( Aaaargh!!! Help?!!
 
Twitchy, you can do this 🙂

If this does turn out to be type 1 and this child does end up in DKA or worse, wouldn't you need to know you have done everything you possibly can.

I know you are and I know how hard it is to not want to frighten the mum or to overreact but would you rather lose this woman as a friend whilst making sure this child is ok.

Tell her about the sad death stories and say you have been in touch with a few parents of children with type 1. Tell them you asked for their help and they told you in no uncertain circumstances that she needs 100% to get her childs finger tested asap. Tell her that some of the parent's children ended up in DKA due to misdiagnosis by their GP's as it is rare for a GP to come across a type 1 child (it is really it is) and so it is misdiagnosed and sometimes its just to damn late.

I would now be blunt with her and tell her as it is even if it frightens her. You can explain you don't want to have to do that but if it is type 1 you need to catch it now. If it isn't type 1 you will walk away minus a friend but you know you did the right thing and would do it again.

I'll happily chat to her if you think it would help.
 
Thanks Adrienne - I will try & catch her & urge her again - I'd hate anything to happen to the kid - their health is way, way more important than whatever the mum might think of me! x
 
Twitchy said:
Thanks Adrienne - I will try & catch her & urge her again - I'd hate anything to happen to the kid - their health is way, way more important than whatever the mum might think of me! x
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Yep agreed. Good luck and lets hope its not type 1
 
Twitchy, any news on this family? Did you manage to speak to the mum again?
 
Adrienne said:
Twitchy, any news on this family? Did you manage to speak to the mum again?
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Was wondering the same thing ... This situation is worrying me:(
 
MeanMom said:
Was wondering the same thing ... This situation is worrying me:(
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Yes and me. Even if its not t1 then it has been handled appallingly as it could be.
 
No update yet I'm afraid - I've had either food poisoning or the D&V bug doing the rounds 😱 so hubby has been doing the school run - with strict instructions to ask if the kid's had a finger prick test & keep on urging the urgency / importance of the issue!! Unfortunately I think something's got lost in translation & he only asked how the kid was - mum says he's fine - so I don't know if that's "he's had a finger prick test & he's fine" or it's "no-one's told me otherwise so I'm assuming he's fine"?! :confused: I'm able to pick up today so I will try (again!!!!) to get the urgency of this situation across. I don't know what it's worth, but hubby said the kid was legging it around with the others yesterday... still really worried though!! :(
 
:( hope you are feeling better.

As far as 'legging it round with the others' may or may not mean anything. My K started her symptoms (loosing weight) more than 18 months before Dx - but we think her pancreas must have doing the occassional 'splutter' which delayed the 'crisis'. During those 18 months she has good days and bad, but she managed to study for, sit and pass the entrance test for the local grammar, and she was also bridesmaid (very thin one) at my brothers wedding. We also went on a camping holiday which involved lots of walking but also lots of pizza eating😱

I read the other day another parent call T1 a spectrum disease, and I think this is a good way to think of it. Symptoms onset and treatment will vary by person.

Why GP's don't just do a quick wee or finger prick test just to eliminate it I will never understand.

Anyway hope it turns out he has been tested and found OK, for your peace of mind if nothing else🙂
 
Seems they are booked in for a finger prick test on monday... Just hope to God it isn't D and that the kid is ok.... I did say again that it really needs checking urgently and if it was my kid i'd be in there today, but not sure what else i can do- another mum added that her other half had nearly gone comatose before diagnosis, so at least they might not think it' me being a doom merchant ir something. 😱. Hope the kid's ok!!!!! Can't help thinking their gp needs a hiding for complacency tho... :(
 
Twitchy said:
Seems they are booked in for a finger prick test on monday... Just hope to God it isn't D and that the kid is ok.... I did say again that it really needs checking urgently and if it was my kid i'd be in there today, but not sure what else i can do- another mum added that her other half had nearly gone comatose before diagnosis, so at least they might not think it' me being a doom merchant ir something. 😱. Hope the kid's ok!!!!! Can't help thinking their gp needs a hiding for complacency tho... :(
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Deary me. This is the problem. This is why I said on a thread on the main area bit that GP's should leave well alone and leave it to the specialist medical teams. However they should at least be taught the symptoms and just do a finger test. Surely that is basic. So naughty. I guess they never expect to see it though do they, still not good enough.

Keep us posted.
 
Brilliant news!

...tests have all come back clear, no signs of type 1 or anything else nasty, Thank God!!! 🙂 🙂 🙂
 
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