Can any parents of a child with T1 diabetes talk to me about their child's diagnosis please?

[DuchenneParent]

Hello, my daughter (2) is being investigated for T1 diabetes, I dropped off a urine sample for her GP this afternoon and I should hear back in a few days.

Her symptoms are excessive drinking and urinating (she chugs down bottle after bottle of water, and I struggle to keep up with her nappies and have to schedule changing her nappy through the night or it seeps out all over her bed), and being really sleepy (for example, she went to bed at 7 last night, and didn't wake up until 11). Other days she might fall asleep really early. She usually naps but often will need waking up if it gets to 4ish or she would just sleep and sleep. Sometimes she seems sleepy during the day and lies on the sofa yawning.

However, usually while she is actually awake she doesn't seem ill. She isn't bouncing off the walls like some toddlers, but she does potter about playing with toys and bringing me books to read.

I just wondered if this sounds like others experience? Would she seem more 'ill' in her waking hours if she had T1?

I also wondered how reliable just having a urine sugars test is? When my son needed his blood sugar testing once in A&E they did a finger prick test. I would hate for something to be missed in a urine test and then for her to get really poorly at a later date.

Maybe she just really likes to drink and sleep! It would be nice to chat to someone more knowledgeable in the meantime though! Thanks in advance.

Bump

Hi there. My son was diagnosed aged seven. This sounds familiar. He suddenly went downhill and was admitted to hospital. If I’d realised sooner I would have been at a and e with him.

If you are on Facebook please join this group - there are many supportive parents there: www.facebook.com/groups/18414742527/?ref=share

“Parents of children with T1 diabetes in the uk”

Thank you, I will check it out! My other child has a medical condition and FB support groups have been amazing, so I know how helpful they can be.

She can have a simple finger prick blood test. Far better than urine testing and its what I would use initially. Very odd. Its not something to treat lightly so this seems strange to me

Thank you, @samanthawashington. It was the practice nurse we dealt with. Do you think I should push for a fingerprick test even if the urine levels are normal?

Following with interest!

They should absolutely have done a finger pick test and dipped a urine right there. No idea what they're waiting a couple of days for! A urine dip on a child with diabetes (not under control) will show glucose and ketones. If the urine dip is negative then it is unlikely to be that, but if she is drinking so excessively they should be investigating that too.

Children with type 1 diabetes undiagnosed can get unwell very quickly so at the very least id say to phone them first thing tomorrow. But consider calling nhs 24 tonight for an out of hours appointment if you are at all concerned about her. Hopefully its nothing and all is well though!

Thank you, @IwillrunIwillfly. I will give them a call to chase it tomorrow. DD was in good spirits tonight. It was a virtual appointment, they would not give us a face to face appointment (covid) so there was no 'there and then' (sorry to drop feed).

@DuchenneParent

Thank you, *@IwillrunIwillfly*. I will give them a call to chase it tomorrow. DD was in good spirits tonight. It was a virtual appointment, they would not give us a face to face appointment (covid) so there was no 'there and then' (sorry to drop feed).

If you can I would go to local Tesco/Pharmacy and pick up a glucose testing kit. They aren't expensive and you will know straight away.

If she's been like it for a while she could go downhill very quickly.

I don't want to scare you but it can get bad very quickly: www.kissesforkycie.com/

Dont apologise! Not a drip feed at all, my frustration is on your behalf at the gp practice! If they suspect diabetes in a child they should test for it there and then! Fingers crossed all is well tomorrow though!

Thank you for sharing, I will certainly take things seriously. It is something that has come on gradually, so she has been like it a while. The pharmacy kit is a good idea.

My DD is nearly 30 but was diagnosed with Type 1 as a young child.
She went from refusing drinks (especially water) to pestering me for water within a couple of hours. She has autism so I am always 'on her wavelength'. My mum was a district nurse (so was I) and as I was visiting her and dad I rang her (she was working in the walk in clinic with the Gp in the village) - I took DD to the clinic and the gp dipsticked her wee. Full of glucose. GP rang local hospital and off we popped.
Dds bloods were taken and even though her glucose levels were high, her HBA1C was normal - her diabetes had been caught early.
I had given 1000s of insulin injections but I struggled to give to my daughter. I soon got used to it. She learned how to do it.
It's a shock but it's like lots of other things... they become your new normal

They need a blood glucose test ASAP-
My son wasn’t at all unwell but was drinking, weeing and sleeping more than usual. Saw nurse at the surgery after school- blood glucose 32.9 (33 was the max on the monitor), straight to hospital for 6 days learning to inject insulin and count carbs. Type 1s can go down hill very rapidly (son ended up in a&e after 14 hours of no insulin) so please get it checked before the morning if you think they might be type 1.

Any reading over 11 means a diabetes diagnosis for a child.

Just to say that if it’s not T1D there are other conditions which cause similar issues.

My son was born with hyperinsulinism (the opposite of T1D). That resolved but he now has Ketotic hypoglycaemia which causes hypos after very short periods of fasting. Never has high sugars but can drop low and we use a blood sugar monitor to check him, especially in the mornings. Lethargy is a major symptom of hypos. He also has extreme thirst and frequent urination.

They also had to rule out diabetes insipidus which is rare but relates to fluid intake and output rather than blood sugars.

So keep on with doctors if it’s not T1.

If the finger prick result is concerning they should then do a Hba1c blood test to rule out T1.

I too am disgusted that they are so blasé. I am a diabetic of 40+ years, diagnosed at 1. They should have done a blood test there and then, not only a phone appointment but a visit to the surgery. Please ring tomorrow and chase, and be firm.

Thank you so much for sharing everyone! Don't worry, I will be chasing it first thing tomorrow.

Those are important things to consider as well SinkGirl, I will certainly bear that in mind!

That’s good to hear. It is not something that can be left, as others have said. Let us know how you get on.

I wouldn't be waiting a few days. Excessive drinking and weeing, soaked nappies for little ones, more tired and losing weight are symptoms. We had the first two that highlighted something wrong. Didn't have weight loss or tiredness. Although symptoms don't sound "serious" if it is T1 diabetes then what's going on inside the body is deadly serious. Quick diagnosis and treatment is key as they can go downhill rapidly. It's no joke when they say just head to A&E. I felt silly but went to A&E and thank goodness I did. You need a blood test to eliminate or confirm and go from there.

Hello, I called this morning and the person on reception told me that it had been tested and that there was told that there was 'no trace of glucose'.

The nurse should call me later so I will discuss with her if it could be anything else.

Thank you everyone for your help yesterday.

Hi @DuchenneParent did you ever get to the bottom of your daughters symptoms?