Question re diabetes in children

[GingerIvy]

I wasn't sure if I should post this in here or the diabetes section, so I've posted in both. This may be nothing to be concerned about, but my 8yo has been quite thirsty lately, drinking quite a bit more than usual. He has also been urinating a lot more frequently, getting up at night a few times. His appetite has been a bit off the last few months - nothing drastic, but just "off" - which I know is hard to explain. He's not having any specific UTI symptoms (such as lower abdominal discomfort or pain/burning on weeing). This has been going on for awhile now,possibly a couple months if it goes back to when his appetite changed a little. He's not lost any weight that I can see (weighing him is a struggle - he's autistic and doesn't stand still on the scale).

Anyway, we have a massive family history of diabetes in my family, including a number that are insulin dependent. I made a routine appointment with the GP but it's not until the 29th (soonest they could get him in for routine appointment). Should I be taking him in sooner, or using the next 2 weeks to note any possible things that might be related and jot them down, watching what he eats, just in case? Is this even a concern? I don't want to ignore something important, but neither do I want to be alarmed over nothing.

He will NOT cooperate for a blood test, so I anticipate an almighty shrieking session and the need for him to be held to get that done. I was hoping desperately that it could be checked by finger stick, but is that ridiculously naive?

A finger prick and a uribe dip is exactly the tests they would initially do so nothing to worry about there! If he was foubd to be diabetic he would need further bloods but you can cross that bridge later if need be. If you think he's showing signs of diabetes phone and insist on an earlier appointment, maybe ask even to see the nurse? Hopefully hes fine but diabetes left untreated will get worse and would make him seriously unwell.

I'm going to ring the triage GP tomorrow and see if he can't be seen tomorrow, even if it's just to get the urine dip and the finger stick done.

He needs to be tested ASAP as untreated type 1 diabetes can be extremely dangerous. Dr should be able to do finger prick test for blood sugar level and urine dip for ketones. Does his breath smell sweet or of pear drops? It can be indicative of high blood sugar levels and ketones.

Forgot to say to mention family history to dr receptionist as it could drastically increase his chances of developing Type 1.

Yes, needs checking urgently.

When ds2 was diagnosed I took his wee sample in with me (in a carefully cleaned bottle!) just because I though that would be easier than getting him to wee in a pot in the toilet at the surgery. The GP stuck a test strip in the sample, and a few seconds later was telling me that it was diabetes. I didn't believe her - I was convinced that when we got to hospital they'd have to run loads more tests and would eventually tell us it was an unnamed virus. Sadly not.

My point - it's a really quick simple thing to test for.

They did want to do proper blood tests in hospital - ds2 did not cooperate, and they got it done anyway. Yesterday he had his first lot of proper blood tests since diagnosis (6 years ago). They put numbing cream on his arms first and he was still waiting for them to start when they said they'd finished .

I hope your ds doesn't have diabetes, but do go get him checked!

Thanks. Yeah, watching him go to the toilet multiple times today. Just concerning. And he's pouring drinks for himself throughout the day - since he's always got a drink of some sort on the go,it's hard to get an accurate check of his breath - unless I catch him right away in the morning.

He's got an appointment today around lunchtime.

Hope your DS gets on well today.

You'll probably hear the screams through the UK when they go to do the finger stick.

Bless him. I'm a bit needle phobe myself so he has my sympathies. Ask for the numbing cream on arrival if possible.

Thanks, I'll do that.

They wont do numbing cream for the fingerstick (interferes with the results, and not really needed). But if they send you to hospital, get the gp to put numbing cream on before you go (takes an hour to work).

Good luck

Ok, thanks. Dreading this, but know it needs to be checked. Hoping it's just something simple and not diabetes. Sorry, but he's already dealing with autism, sensory problems, hypermobility, asthma, dyslexia, eczema, and PDA, I really do not need diabetes added to the mix.

Poor little mite. Hope you get an answer soon.

One of my boys has has hyperinsulinism, so the opposite of type 1 diabetes. He was diagnosed very early (about two weeks old) and has been constantly stabbed and messed with his whole life - at one point in the hospital he was having heelpricks every hour, poor thing. We are now down to about 4-6 times a day depending on how he's doing. I promise you he would get used to it - the thought of it makes me feel sick but I swear he doesn't even flinch now. The earlobe is a good site with older kids - really doesn't hurt as very few nerve endings and a good accurate reading (we currently use toes). I'd get him in asap - blood sugar is nothing to be messed around with. He will probably need a fasting test I would have thought so maybe make an appointment first thing and skip breakfast? Hope the tests are clear x

I feel for you op, but strongly agree with others that he needs seeing.
My son was diagnosed at 2 🙁 he’s also autistic but didn’t know that at the time.
I’d noticed he wasn’t himself he’d lost weight drank continuously dark circles under his little eyes.
I’d seen my health visitor as he was not hitting milestones so he was watched closely she wasn’t concerned but I took him to my gp who said in short “ I’m being an over panicking parent, he’s fine I need to calm down etc etc..
That afternoon my friend came and I told her what happened and that I wasn’t convinced, I found the dr offensive and it made me feel u comfortable going for advise.
She was a god send she said right no trust your instincts we got in car went to hospital the min they looked at him he was straight through, the nurse said she New right away!
I couldn’t take it in at all as nobody wants to be told that news but I’m so glad I went because they said within 24 hrs he’d have been in a coma he was that poorly.

So plz do go push, do whatever you need to.
My gp didn’t know what to say to me when I returned to give him the news and I received a written apology that afternoon.

Okay. He was seen today. Blood tested 2 hrs after lunch (toast and juice - his choice). Result: 19.5

GP sent us immediately to hospital where we waited a few more hours (with two autistic children - one in meltdown almost the whole time). When he was willing to let them do the finger stick, the doctor said they wanted to take the history first (knowing by the GP's letter why we were there and knowing it would have to be done). By the time the history was done, they talked more and then ds was over-anxious and didn't want to do it. Finally talked him around, and doctor then stood waffling for 10 minutes about whether or not to do a finger stick or if she'd need an IV for fluids for him and succeeded in upsetting him yet again. Finally talk him around again and got finger stick. Result: 6.5

She then took the urine sample we'd brought,and said she was going to go check it. She was gone almost an hour. By that time, ds was sobbing and screaming that he wanted to go home. THEN she came back and wanted to examine him. (Instead of initially when he was cooperative!!!) She told me she absolutely had to listen to his chest. I explained that he was absolutely frantic with anxiety and didn't want anyone to touch him now and that the GP had JUST listened to his chest thoroughly earlier this afternoon. She insisted for a few more minutes, succeeding in pushing him into meltdown again. Then she decided maybe she didn't need to listen to his chest. She told me there were no ketones, but then said she had to check his urine (which she was supposed to have been checking during that hour she was out of the room). He was by this time screaming over and over IwanttogohomeIwanttogohome. She came back a few minutes later and said he didn't have diabetes, but they were sending him to a diabetic clinic anyway... that the blood sugar never goes down if they have diabetes, so it should have still been 19.5... that she had no idea why it was 19.5 but as it wasn't diabetes we shouldn't worry. Then she said maybe it's diabetes insipidus, told us to go home and they'd ring in a week to arrange him to go to diabetic clinic.

I'm baffled.

Basically ignore everything she said and wait to be seen by the clinic (hopefully quickly!) who will know what they're talking about. Sugars being up and down sounds unusual although must admit I don't know that much about T1, My little one's sugars were all over the place before he was on meds, but certainly never as high as 19 - they ranged from 1.2 to about 10 at the highest. I'm the 6s is a happy reading for us, on most days it never gets that high. Did they take blood to test his insulin levels? This may have to be a fasting test, it does for my little one, but again it's a different condition so I don't want to give you incorrect information.

You could buy a monitor from the chemist and keep an eye on him at home? The strips and lancets cost a fortune if you buy them, not sure if the gp would prescribe short term until you get seen?

Op omg I’m just as baffled as you?
What on Earth! You really do wonder why so many dr’s are so clueless to autism and it’s affect, the huge anxiety he’d have felt and the distress he was obviously showing would surly be enough you’d think to take a more sensitive and sensible approach the poor love.
I know one things for your a 19+ blood sugar isn’t good and he won’t be feeling great at all plus from experience the transition of high to low and low to Highisnt pleasant because your body is going through so many changes. Most probably adding to his mood confusion and resulting meltdowns.
My son was sky high when he went in and after the finger prick the dr said yep it’s diabeties but then double confirmed after urine analysis so I’m guessing there is definitely something going on. I’m no dr but none diabetics stay between say 5-7 not 19.
This will be why he’s drinking & peeing more as it as my son says makes you feel like your in a desert and u can’t get any water you get hot agitated feel sick and uncomfortable.
Did the dr not consider that if your ds is just begging with diabetes then he could well be still going through what they call a honey moon period?
You see the pancreas takes time to die off and so it still gives out as much help as it can till the last breath, hence your sugars can come down again. This happened to my son but sporadically so he was all over the place for a good while.
So people can becoming diabetic for a good while before it’s picked up because the pancreas is still giving a bit if you see what I mean.
I may be wrong here but I’d be careful op personally I wouldn’t want to wait a week most certainly my diabetic nurse/team would not have released him he should be on the diabeties Ward being tested. That’s what my hosp said to us the kids are taken straight away if suspicious arises as it’s so dangerous if untreated.
I don’t want to scare you but maybe call the diabeties Ward at your local kids hosp and tell them your concerned.

If his blood sugar was really 19.5 (rather than a contaminated test) then he has diabetes. It can go down on it's own in the early stages because the pancreas is still producing some insulin - it doesn't just stop completely all together.

www.diabetes.org.uk/professionals/position-statements-reports/diagnosis-ongoing-management-monitoring/new_diagnostic_criteria_for_diabetes

This is the info on diagnosing diabetes. A random test of over 11.0 is positive for diabetes. And there really isn't a lot else it could be.

Please kick up a fuss and get him seen again, however awful it is. Diabetes can grumble away slowly getting worse over a period of months, but it can also kill in days.

A chemist can sell you urine test strips that show ketones. Ketones are the dangerous thing - those are what land you in ICU. And you just need to dip them in his wee.

Thanks so much for this info. The doctor at the hospital was very dismissive of the test the GP ran (it was finger stick).

I will ring the GP tomorrow and ask what the best course of action is. I think ds would cope with being tested a couple times a day over the next week just to make sure, as long as I explained to him why. He'd likely deal with it better at home than he did at the office or the hospital.

Hospital doctor told me ketones were negative,but THEN said she still had to check the urine. Isn't that in the urine?!? She dunked two separate strips on the finger stick and put them in two separate machines. One was for blood sugar (6.5) but not sure what the other one was.

I am no expert on diabetes op but the second strip was probably ketones, they can test blood ketone levels the same way they test for glucose. She will then be testing the Urine for both. Hope your son gets sorted.

Okay, that makes sense, thanks.

Yes, the GP's 19.5 could be just wrong. Sugar on someone's hands.

And not having ketones is a great sign! (Both glucose and ketones can be tested in urine or blood. The urine is a delayed result - takes longer to show up).

BUT he has other symptoms. If you do test at home, do it an hour after lunch or the evening meal. The pancreas seems to manage to cope in the mornings, in the early stages.

I do hope he has some odd virus that will go away. But I also know that diabetes gets missed too often, and there are a lot of sadly misinformed medical professionals out there.