daughter being tested for diabetes: advice or expriences of this please?

[lulurose]

Hi all, took dd2 to GP today (she is 19months). She has, over the last week or two gone from drinking 2 or 3 cups of water a day to about 12, I have been changing her wet nappies constantly. Her colour had gone and she seemed very grumpy inbetween meals. My GP has taken urine samples and she is going for blood tests tomorrow, the main concern for him was diabetes and he said drinking this amount of water was a concern.

I am sitting here fretting now and wishing I had asked more questions.

Any advice or experiences of these symptons would be gratefully received.

Thanks

Hi Lulurose. My 3 yr old was dx in January of this year. He too was drinking loads and, most unusually, had leaky nappies a couple of hours after going to bed so I had it figured out and took him to be tested for diabetes.

Were there sugars or ketones in your DD's urine samples? If so, do you know how far up the scale they were? Has she lost weight? I don't really have much advice but lots of empathy. It's horrible and it's distressing but if it is diabetes, you will get there and you will get lots of support here and elsewhere.

I don't have much advice at this stage. All I would say, is that if your GP is taking samples and sending them off to the lab, ask him to do a finger prick test there and then. If your DD does have diabetes, you need her to get treatment asap not to having to wait around for days for results.

It could well be something other than diabetes, I don't know.

Ask any questions you wish, and I'll try to check in later.

HTH

Thankyou for replying so quickly, I hope all is ok with your little one. I have just been doing some research online as diabetes is not something I have had any direct experience of. All the sympton lists fit my dd accurately but its a waiting game really. Apparently I will have the tests back in 5 days, the hospital are taking blood tomorrow and i've been given urine bags to take a sample for the hospital too but in the meantime....?

I am worried now but thankyou so much for posting

Lulurose, I don't want to scare you but do not accept a 5 day turnaround for blood test results. Diabetes not caught early can develop into a life-threatening condition. You need your daughter's blood tested tomorrow with a blood glucose meter which will give an instant blood sugar reading. Please please insist on this and don't let anyone fob you off. Again, I don't want to be a scaremonger.

Thankyou for this, I have been given a blood and urine sample bag to take to the walk in blood test clinic at my hospital. Will they have the facility to do the pin prick glucose test there? Perhaps it would be worth going to a private clinic if not...I really don't want to wait

bump

Lulurose, sorry if I sounded abrupt before. DH was desperate for help in getting two rowdy boys to bed. Again, I really really do not want to worry or scare you unnecessarily. I really hope it isn't diabetes but if it is, the sooner you start treating it the better.

Your GP ought to be able to do a blood test with a finger pricker. Our GP initially asked me to come back the next day for blood tests but I asked him to test there and then which he did. DS had a bgl then of 22.0 on the meter which is pretty high. When he went to hospital the following day (I insisted that he didn't go in at 5.30pm at night given that he was otherwise well), he registered HI (ie. off the meter) and the consultant went through me for not coming in the previous evening . But how were we to know when the GP didn't explain the urgency of it.

If, and I say if your daughter does have diabetes, and the hospital delay in diagnosis, she would be at risk of developing diabtetic ketoacidosis which can be dangerous. For now, don't worry about it but be aware of it should they try to fob you off. Far better to be termed a paranoid mother and told all is okay than to have to deal with anything more serious.

So, yes, ask at the hospital for them to do a fingerprick test and if they won't, goodness I don't know ... shout, scream and ask where you can get it done. If they're seriously concerned that she does have diabetes then they will understand that they need to diagnose and treat it sooner rather than later.

I do hope all goes well tomorrow and that you get the all clear. Hopefully someone a bit more knowledgable than me will come along this evening and give you better advice. Please keep us posted.

And sorry to keep posting but what sort of worrying readings should i be looking for? What would be classed as "normal".

Sorry our posts crossed a bit there. Thankyou sooo much for all the info, I have written it all down, am just wondering why my GP didnt test in the surgery I will let you know how tomorrow goes....thankyou againx

Don't get hung up on it. Normal for a non-diabetic is 3-5 or so but having said that it can be higher depending on what you've eaten. Our DSN was doing a training session for my son's nursery yesterday and hers was 7.5 which was fine.

Lulurose

I belong to a mailing list for parents of children with diabetes. I hope you don't mind but I took the liberty of mentioning your worries. Here is the advice I received

You could tell her to phone NHS direct or if her daughter starts vomiting or
strange breathing or her breath smells of pear drops to take her straight to the
hospital today. Do you know how long the child has been like this?

If the mum takes the urine etc into the hospital tomorrow tell her to take the
wee in two separate containers. One to give over for analysis and one other
pot, on its own, tell her to ask the nurse to do a dip stick test for glucose
then and there. Try to get the mum to get a wee sample as soon as possible just
in case things get worse in the night.

The hospital may not do a finger prick test tomorrow, depending how ill the
toddler looks. Though they may do. Having heard of other's experiences nothing
surprises me!! Otherwise I would go and buy a cheap meter which comes with 10
strips and test. However if the toddler is ill and she doesnt have glucose in
the wee it still doesnt rule out diabetes completely and whatever is making the
girl ill may still need investigating. She may have a raging urinary tract
infection which could lead to kidney damage if left untreated.

Do you know where in the country the mum lives?

I hope the advise above re taking two seperate samples is helpful.

Thankyou again, I will take 2 samples and ask for a dip stick test there and then. She is fast asleep now but i'll keep an eye on her (we've taken to changing her in the night due to soaking wet pyjamas and sheets in the morning).All of these symptons seem to have started quite suddenly but she has definately been drinking out of need rather than habit.

I am in North London by the way x

Lulurose - try to get some sleep and don't stress to much until you have to. The advice re two samples is good and if she gets ill during the night, take her straight in. I'll say a prayer that it's a false alarm for you. Please keep me posted tomorrow if you can - fingers cross all will be okay. Take care & lots of luck.

Any update Lulurose? Hope everything's okay.

Hi Millie1, I have just come back from the hospital and had to come here and thankyou for your advice last night. Tess does have diabetes and has been admitted, my dh is there with her now while I get some stuff together for overnight. I took her to Aand E this morning as I didn't want to wait 5 days. They tested urine and found high glucose and ketones(sp?) and then took her in for bloods, turned the result round in half an hour and a senior paed consultant confirmed diagnosis at lunchtime. I will be back.....not sure what lies ahead but thankyou for your advice, I really did act on it and feel angry with the GP when she was clearly presenting with diabetes symptons....Thankyou, and love to you and your family x

Lulurose, I've been thinking about you all day and am so so sorry about Tess. It will seem overwhelming during the next few days and weeks and I'm sure you've cried many tears, if you're anything like me.

If I can do anything to help, please let me know. Let me know if you want to e-mail off-line and I'll give you my e-mail address. In a few days when you get your head together, I'll tell you about the mailing list I belong to (which I mentioned last night) ... you'll get far more advice from there than I could ever offer.

BTW, ketones are produced when there is no insulin to release glucose from the blood cells into the system. The body needs glucose for energy and produces ketones as it burns muscle instead of fat. You simply don't want them present.

Take care over the next few days and please keep me update.

M

Lulurose, I've just read your post and I'm flabbergasted at your GP's attitude.

Diabetes in a child as young as Tess is unusual but for your GP to voice concerns and not act on it immediately is shocking. Diabetes can, if left untreated develop into a lifethreatening illness and your Gp's response was inappropriate. Your dd shhould have been referred to paeds immediately.

I would write a letter of complaint to the practice and point out to the paed looking after her the response that you got from your GP. Her discharge letter to the GP may have a comment in about it!

Hi again, Having been at the hospital with Tess since yesterday I am staying at home this evening with my older dd while dh does the night shift. Yesterday the adrenaline kicked in but today I have felt really low and teary, and its all beginning to sink in. Tess is ok in herself but typical blood sug readings are in mid 20s and shes having insulin after meals and a slow release one at bedtimes. Am noticing shes less thirsty and she is adapting to her surroundings amazingly well, the nurses are good and have been showing us how to administer and test but its not really sinking in. I will be back for further advice as I am feeling totally bewildered....

Thankyou xx

Hi Lulurose

I'm sorry it's been such a tough 24 hours. It's a real shock to get news that your child has diabetes, especially as you begin to understand more about the condition but you will cope and soon it will be a way of life for you. When our son was diagnosed, people said 'It's good he has been diagnosed so young because at least he's growing up with it. It would be much harder if he was a teenager'. In many ways they are right, the child does adapt quickly and doesn't have too many bad habits to change but by gum, it's tough especially with little ones and food. We found that, for a while, food became a real issue (and that may have been, in part, down to the fact we have a very strong-willed three year old) but then things settled down.

It will take them a few days to get Tess' blood sugars under control and down to where you want them. At the moment, it's much tougher on you than on her. Your first injections will make you feel like your heart is going to break but you will soon become 'hardened' to it, in a way.

Ask as many questions as you want and cry as much as you need to (I still have teary days, eight months on). Have you had contact with your DSN (Diabetes Specialist Nurse) yet? She/he should give you lots of help and advice. You should also get to spend time with the dietician but with it being the weekend, I guess some of these things might happen at the beginning of next week.

What age is your other daughter? It's upsetting and confusing for her too.

My heart goes out to you Lulurose. Keep strong.

ps. you'll be amazed at how quickly Tess begins to feel better and she'll soon be playing around as usual.

Hi again, my parents have just left and I now have the job of ringing round other friends and family and filling them in....am already getting lots of helpful and some not so helpful advice.

Thankyou so much for letting me know your experiences, mumsnet is brilliant, such a supportive environment. Its great to hear positive experiences of young ones with type 1 diabetes, I hope your son is thriving and having fun!

My older dd is three in October (they are 15mths apart) I think i'm in for challenging times as shes starting pre school next week and i'm worried its all too much. At the same time I want to sustain as normal as possible routine...there are photos of them both on my profile.

I would love to chat more as I have so many worries but I eally must get to bed now so I can take over at hospital in the morning. I would be very interested in the support group you mentioned so will definately exchange emails soon if thats ok with you....thanks again x

Yes have seen DSN and seeing the dietician and consultant again on Monday x

I was diagnosed with type 1 when i was 9, am nearly 33 now. Tess will be fine. Diabetes always upset my mum more than it did me.

I can't believe your GP either. Mine was the same when i was diagnosed and i ended up with DKA and blood sugar levels of 45!

There have been so many improvements even since i was dianosed and it's much more common nowadays.

I've never let it get in my way, survived school, uni, travelling and even childbirth (twice!) !!!

Hi, sorry to hear about Tess, but at least she's being sorted out now.

I was diagnosed type 1 a month after my 3rd birthday, and can honestly say I can't remember anything about it. It was difficult for my mum & dad but they were sort of relieved that it was something that could be treated, I was very poorly before diagnoses and they were starting to think the worst.

Like paddyclamp, there has never been anything I've not been able to do (I'm 9 weeks pg with my 1st and have been a nanny for 14 years which is what I always wanted to do), and in a strange way I'm glad I got it when I was little rather than when I was older, because I've just grown up with it and never known any different, so didn't have to adapt.

My mum & dad were members of the local diabetic family group, and we were forever meeting up with other diabetic children & their families and doing fun things, it was good to have diabetic friends who knew what it was all about!