# Diagnosis, stories?



## jimmysmum (Nov 30, 2009)

Hi,

It would be interesting to hear how your child was diagnosed and the story leading up to diagnosis, only if you want to share of course?

Our son looked like he was coming down with the virus we had all had and was off-colour for a few days but started drinking tons of water and being very lethargic, i had this gut feeling something was really wrong with him so on the tues i made him a Dr appt for the next evening. Tues when he came home from school he drank a pint of icy water and fell asleep on the sofa, so not like him, basically by the time he got home from school on the Weds his bottom lip had swollen so badly and his mouth was full of thrush. I was so pleased we were going to the Dr appt at 6pm and thank god we did.

I have to admit i 'googled' his symptoms and it came up with diabetes but i brushed it off thinking 'no way not my child' so when the Dr done a dip stick ketone test & he had the max amount of sugar/ketones and she said im afraid it is looking like diabetes i was in shock, we had to go straight to the hospital by which time he was heavy breathing and in a bad state of DKA, the rest is history as it were.

Im still amazed at how poorly he became in such a short amount of time and how out of the blue it all arose.

Paula x


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## mazbazy1 (Nov 30, 2009)

Hi,


Our story is similar to yours. After about two weeks of A taking afternoon naps we started to wonder if there was a reason other than tiredness. (A was a child that never rested while the sun shined). We started to list all the changes we noticed in her, drinking gallons of squash, needing the loo constantly, weight loss and a change in personality. Our sweet four yr old, was now moody and agressive. Then it dawned on us, diabetes. (My husband has two nephews who are T1).

We made a quick trip to the local chemist to get some Diastix and this confirmed pretty much in our minds that we were right. Rang our GP immediatley and made an appt. for the next morning. We arrived there with an over night bag packed. After tens minutes were sent to our local hospital, where we spent the week that has changed our lives for ever.

That was a year ago this week. A is doing ok, but there isn't a week that goes by without me shedding a few tears. Will it ever get better? Will I ever be at peace with diabetes....


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## grahams mum (Nov 30, 2009)

graham was3 and after a week of dinking a lot went to the gp on friday my doc was on holiday and this lady doc was insisting that he had a UTI wee sample never tested for diabetes wait on monay nothing on tuesday they are saying that the hospital lost the sample  wednesday morning graham start vomiting water  call gp wee sample again rush to the hospital he was in ketoacidosis coma he was in resusitacion until the night and when i aked the doc to test for diabetes  i felt silly bcause i googled the simptoms and diabetes was the only word that came out the pc mums are always wright  one problem that graham had before the diagnoses was lots of croup attack he never had one since then so i suppose that the croup virus gave him the diabetes


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## Gemma444 (Dec 2, 2009)

Hi jimmysmum 

I noticed that my son jack was drinking alot of water and going to the loo alot esp at night and saying he had tummy ache. I woke up one night at 3am to find him weeing the the bathroom bin. He was asleep i think as he didnt know what he was doing. I work on a ward in a hospital so i asked one of the nurses and the nurse did a dipstick of jacks urine and it was full of glucose and ketones. I rang my GP that day, explained everything to the receptionist nd wanted an appt ASAP to be told there wasn't any appts for 9 days!! unaccpetable. I was at work at the time so gave my mum a call to help with sorting out my unreasable GP surgery. so she rang the doctors, spoke to our GP who sent my son for a blood test the next day and then we were rang that lunch time to be told to go to the childrens ward. When we got there we were told that Jack my have diabetes, some more tests were done and the doctor came and broke the news. I held back the tears for my son and blamed myself at first. We spent 5 days in the hopsital. 

gem xx


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## Gemma444 (Dec 2, 2009)

grahams mum said:


> graham was3 and after a week of dinking a lot went to the gp on friday my doc was on holiday and this lady doc was insisting that he had a UTI wee sample never tested for diabetes wait on monay nothing on tuesday they are saying that the hospital lost the sample  wednesday morning graham start vomiting water  call gp wee sample again rush to the hospital he was in ketoacidosis coma he was in resusitacion until the night and when i aked the doc to test for diabetes  i felt silly bcause i googled the simptoms and diabetes was the only word that came out the pc mums are always wright  one problem that graham had before the diagnoses was lots of croup attack he never had one since then so i suppose that the croup virus gave him the diabetes


1

Oh dear grahams mum thats awful you must of beeen so worried. 

Gem x


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## grahams mum (Dec 3, 2009)

worried and ANGRY!!!!!


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## Carynb (Dec 4, 2009)

Looking back J hadn't been right for a good few months before he was diagnosed but it wasn't until about a week before his diagnosis that I started to notice he was weeing a lot and drinking. he would get up in the night and fill up his drinking bottle from the bathroom. he was also really grumpy and lethergic which was really unlike him as he is such a happy, energetic boy.The Diabetes alarm bells started ringing in my head, as a nurse I knew the symtoms but thought it couldn't possibly be that and that i had too much knowledge and was being a paranoid mum. A day or so later i got some sticks from work to test his urine and sure enough it was full of glucose and ketones. In the back of my mind I kept thinking there must be another explanation. My GP sent us straight to A+E, his BG was 27mmols when we arrived and I fell to pieces. Luckily further blood tests showed that J was only very slightly acidotic and so did not need any IV fluids. he drank loads of water and managed to flush out the ketones by the end of the day. The DSN came to see us straight away  and spent the next 8/9 hours with us all. she was amazing. There was so much info to take in but we were able to go home that night, the DSN came to see us at home first thing the next day. I cannot fault the care J has received and am truly thankful that we have such a supportive team on hand.
I still find myself reliving the nightmare of that day, perhaps i always will.
C.


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## Kei (Dec 7, 2009)

_This is what I posted on Facebook the day after F's diagnosis, because it seemed to be the best way to update all our family and friends on what had happened, without repeating it all!!
_

On Wednesday I was worried about F. She had been tired for a long time, but we put it down to having school, dancing classes, swimming club and cheerleading club, and not enough rest. We hoped that with the school holidays she would rest and recover. However, she got more and more exhausted and floppy instead, despite sleeping 12 hours a night. She then started drinking insane amounts, which rang alarm bells with me. I knew someone with a little girl who did this, and she turned out to be diabetic. I took F to the doctor on Wednesday. I feel terrible now, knowing how ill she really was, that I made her walk into town to the doctor's, then to the shops and library, and back again. :-( I had made a note of the things I was worried about, as I have a terrible memory, and I took it with me to the doctor's. If I can find it later I will copy it out here, but for now I'll write down what I remember from it:

Absolutely exhausted.
Drinking excessive amounts (2000ml in 4 hours this morning).
Leg ache.
No high temperature so I don't think it's swine flu.
Seems a bizarre thing to say, but the last few days she has seemed thinner.

The doctor was a bit offhand, and didn't read my whole list of things I was worried about, but did listen when I said how tired she was and that she had drunk 2000ml in 4 hours that morning. He gave me a blood test form and told me to get her tested. He didn't make it sound urgent, so we took her in at 08:00 the next morning. By then she was totally exhausted, drinking constantly and going pale. She looked thinner than ever, and as F is a skinny girl anyway, you'll realise how stick-like she was looking. The nurses at the path lab seemed very worried about her. They could hardly get any blood out of her to test, and she was very weak. They rushed her blood samples through at top speed, and we took F home. Steve carried her to the car, and there were murmurs of "poor little girl" as we passed the people waiting for blood tests.

Steve went out to work, telling me to call him when I'd phoned for the test results (expected back at 11:00). A few moments after he left, Dr Johnson from our surgery called and said that F's blood glucose was at 30, which was dangerously high and meant she was fairly definitely diabetic and needed treating immediately. Could I get F to the hospital fast? As I have no car, I said I couldn't but I'd get Steve home and he could probably be back within half an hour to take us. The doctor said he couldn't risk waiting that long and would order an emergency ambulance. I should pack F's nightie, and could I please try to find someone to look after the other two children so I didn't have to take them with me.

I tried phoning neighbours and friends, but no-one was available who could take the children, so they ended up coming with us in the ambulance. DS LOVED it, especially having the blue light on, but Baby was a bit bewildered. F submitted to everything calmly. By then her breathing was alarming, and the paramedics put her on oxygen.

As soon as we arrived at A&E, F was wheeled into the resuscitation room, but I couldn't go with her as I had to take care of DS and Baby. We waited in the parents room for Steve to arrive. When he did, we were told that we could all go through to F. She was lying on a big bed in the resuscitation room, looking very ill, but being a total star. Baby and DS behaved very well. We were there an extremely long time and neither of them were a nuisance. DS did get very hungry, so Steve took him to get some lunch while I breastfed Baby next to F's bed.

F stayed calm and unfazed throughout, while several doctors, consultants, nurses and student nurses came and went, pricked hands and arms, attached drips, etc... The consultant explained to me that she had Diabetic Ketoacidosis, and that it was a good thing we had brought her in when we had, as her hands and feet were already starting to "shut down". She certainly looked very ill, greyish and unlike my normal lively F. She was put on an insulin drip and another drip to hydrate her (don't ask me what ... I was too tired to take it in!) and attached to monitors, so she had tubes and wires protruding from every limb and needed two people just to hold all her drips and machines when they moved her bed.

In the evening she was moved up to the children's ward, in a little single room with a view of a fishtank from the door. She seemed to like watching the fish (although by then she had stopped speaking to anyone) and gave a wan smile at the pretty paintings around the walls. The children's nurses were fantastic with her - exactly the right mix of reassuring and informative, without condescending to her. I could see that she was already starting to feel a tiny bit better, although not a lot! Her breathing was not good and kept setting off alarms on her monitors.

I stayed with her till around 9:00 in the evening. Steve and DS fetched my mum over, so that there would be someone at home to care for the children. The nurses and play assistant were fantastic with Baby, who was still behaving beautifully. They brought toys, nappies and babyfood along for her, played with her when I needed to speak to the doctors, and found a pram so that I could put her down for a nap.

Just before I left for home, I asked F how she was feeling and she told me she had a headache. I had been warned to watch out for this, so I informed the doctor immediately. He and I were both fairly sure it was due to the beeping on her monitor. Her breathing kept setting the monitor alarm off, and there was a fault on the machine which meant they couldn't turn the alarm off. By the time I got home I had a thumping headache from the beeping, so I'm not surprised F had! However, as headache is one of the warning signs of water on the brain (which the treatment can cause if they do it too fast), they decided after Steve returned to move her to the high dependency unit in the city hospital, where she could be kept under observation and treated quickly if necessary.

Another blue light ride, and she was there. Steve was able to sleep in the carer's room there and be with her in the morning till he came to fetch me. He was able to report to me by then that she looked pinker and was smiling at the TV over her bed.

When I got home I had dinner, updated Mum, updated on here, put DS to bed, fed and cuddled Baby and went to bed. I didn't sleep much, but I'm sure lying down and resting helped. DS continued to be a superstar by not getting out of bed once (he normally gets out a few times a night). In the morning I got up, fed Baby, showered, dressed and grabbed a few things for F, then it was straight out to the hospital again, leaving Baby and DS with Mum.

_F was in hospital for a total of 5 days - 1 in the HDU.After that, the diabetic nurses came out every couple of days for a week, and the dietician came out twice to advise us on carb-counting.  F started gaining her weight back, and now (4 months later) is doing very well._


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## Northerner (Dec 7, 2009)

Kei, thank you so much for posting yours and F's story! What does surprise me is that it took so long to realise what the problem was. A fingerprick test would surely have shown that her blood glucose was too high, without the need to wait (it only takes 5 seconds FGS!), plus there should have been the telltale acetone smell on her breath - and with the other symptoms, it really was a classic case of Type 1 diabetes. 

My BG was 37 and I was barely functioning when I got to hospital, but I felt much, much better once I had started receiving treatment - and I felt so good in contrast to how bad I had felt that I felt fitter than Paula Radcliffe, although I was still rather ill. I think that contrast helped me to come to terms with diabetes - I knew that I didn't want to feel that sick again, and how much better I could feel by looking after myself (I had had symptoms for quite a while, so hadn't felt well for ages until everything suddenly went wrong). 

Hopefully, your daughter will also retain some of that feeling of well-being, and it will help her get through times when diabetes feels a bit too much for her.

Thanks again for your post


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## Patricia (Dec 7, 2009)

I'll admit I can't read any of these stories without welling up. Such conflicting emotions: all the time you know it could be so much worse -- but actually, this is bad enough! Oh dear.

And do you know what? I actually can't write out the whole diagnosis story yet. I got onto this to reply and write it, but I can't.

I will say though that we were luckier than most. E himself, 12 at the time, noticed the symptoms. I watched him closely, knowing the signs. Saw nothing. He wet the bed. Extremely unusual. But was under huge stress practicising for an important piano competition. When I think how he used to get up to practice, all the while his sugars so high...ANYWAY. Looking back, he was grumpy and emotional. He *said* he was drinking loads. But I didn't see him do it. And he was also under stress. So he won the competition -- making him champ in this county. The day after, he wet the bed again. I thought, this is it. We must check it out. I hoped and hoped for a wee infection. But sent him to doc's with his father with a urine sample. His bgl was 31. There seemed nothing else wrong with him. I was called home from work, and when I walked in I found him totally devestated, and my husband grey with worry and the stress of holding it together. The GP had phoned and said to get straight to hospital. And that was that. He never went into DKA. But when he got to hospital, the weight just dropped off of him because he hated the food and wasn't processing what he ate anyway. Huge brown eyes looking out of his face.

He was in hospital for 3 days. He was never anything but completely in 'cope' mode, after that initial devastation. His father too is the rock in his life, absolutely. We make it, very well I guess -- but no, I haven't stopped crying, and accept now that the tears, like diabetes, will never go away.


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## Kei (Dec 7, 2009)

Northerner said:


> Kei, thank you so much for posting yours and F's story! What does surprise me is that it took so long to realise what the problem was. A fingerprick test would surely have shown that her blood glucose was too high, without the need to wait (it only takes 5 seconds FGS!), plus there should have been the telltale acetone smell on her breath - and with the other symptoms, it really was a classic case of Type 1 diabetes.
> 
> My BG was 37 and I was barely functioning when I got to hospital, but I felt much, much better once I had started receiving treatment - and I felt so good in contrast to how bad I had felt that I felt fitter than Paula Radcliffe, although I was still rather ill. I think that contrast helped me to come to terms with diabetes - I knew that I didn't want to feel that sick again, and how much better I could feel by looking after myself (I had had symptoms for quite a while, so hadn't felt well for ages until everything suddenly went wrong).
> 
> ...



Yes, looking back, I'm amazed the doctor didn't just do a fingerprick test at the surgery when I took her in.  I was 90% sure myself it was diabetes - surely he must have thought so too!  

F does remember how bad she felt, and the contrast once she'd been on the insulin for a day or two.  Now she is very philosophical about the insulin, etc. and often says "I don't like it, but I know I have to have my injections to keep me well and stop me being ill like when I was in hospital".    She's fantastic!


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## Northerner (Dec 7, 2009)

Kei said:


> Yes, looking back, I'm amazed the doctor didn't just do a fingerprick test at the surgery when I took her in.  I was 90% sure myself it was diabetes - surely he must have thought so too!
> 
> F does remember how bad she felt, and the contrast once she'd been on the insulin for a day or two.  Now she is very philosophical about the insulin, etc. and often says "I don't like it, but I know I have to have my injections to keep me well and stop me being ill like when I was in hospital".    She's fantastic!



What a wise head on such young shoulders! Wonderful!


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## Northerner (Dec 9, 2009)

Northerner said:


> ... What does surprise me is that it took so long to realise what the problem was. A fingerprick test would surely have shown that her blood glucose was too high, without the need to wait (it only takes 5 seconds FGS!)...



I've just read that, when in DKA, the dehydration and consequent reduced blood flow can mean that a meter will show results that are much lower than the true value, so this is why they need a venous sample sent to a lab. You learn something new every day!


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## Kei (Dec 9, 2009)

Northerner said:


> I've just read that, when in DKA, the dehydration and consequent reduced blood flow can mean that a meter will show results that are much lower than the true value, so this is why they need a venous sample sent to a lab. You learn something new every day!



That's interesting!  Thanks for sharing the information.


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## jimmysmum (Dec 12, 2009)

Thanks for all your replys, they are all very upsetting but interesting as most of our kids had similar symptoms. 

Kei your story was very similar to ours and when you spoke about the breathing it brought it all back, i remember Jim's chest literally pumping up and down where he was struggling to breathe and i remember thinking he wasnt going to make the short walk from the car up the hill to the A&E dept where they were expecting us and his grey skin tone  

To think within 5 minutes of us arriving at A&E he was wired up with canula's & monitors here there and everywhere..Jim's machine alarm kept going off too and the nurse kept saying the machine was faulty, i knew she was fibbing, probably a good thing as i was in shock and didnt really speak much, even when the nurse asked if i had any questions i said no! It must have been because i couldnt take in what was happening really, i knew nothing about diabetes and really had a million questions; he too had insulin in one drip and the re-hydration in the other (its saline) its so shocking how they can go from healthy to a bad state of DKA within such a short amount of time.

Thanks for sharing. xxx


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## Becca (Jan 4, 2010)

Am so behind with threads but this one caught my eye purely because it's close to my heart.  Recently i have been collating diagnosis stories, mainly from CWD UK and some from facebook, about diagnosis and how many have been missed, delayed etc.  I whittled them down to about 26 and edited them.  All very hard to read and emotional  

From this i have been working with JDRF and a PR company to highlight these issues and some of them were done on World Diabetes Day.  I'm now hoping to put the document to health professionals etc...

This is Rose's story, as edited for the document,

Case 19:  Rose, aged 3 years 6 months - diagnosed in 2006.

Symptoms before diagnosis: 
•	Skin tags
•	Excessive thirst.
•	Loss of weight.
•	Frequent urination.
•	Tearful and not wanting to go to preschool.

Diagnosis 1 (missed) in Rebecca’s (mum’s) words: 
“I took her to the health visitor on the Monday who asked for symptoms, when she checked with the weight loss she told me to go the GPs immediately, she suspected diabetes.  I visited the GP who listened, said it was unlikely to be diabetes but would do a blood test anyway.  My husband took Rose to the hospital but they wouldn't do the test as you need a trained adult to do it on children.  They booked an appointment for Thursday.”

Symptoms continuing: 
•	Rose was rapidly fading.
•	She didn’t want to play or leave the sofa.
•	Rose’s hair was falling out.
•	She was pale and listless.
•	Very skeletal.
•	Demanding water.

Parent’s intuition:
Rebecca checked the symptoms on the internet and found to have most of the symptoms for diabetes but the GP wasn’t in a hurry so she felt it couldn’t be it.

Diagnosis 2 (missed) in Rebecca’s words:
“I spoke to the locum GP on the Wednesday, who said that they wouldn't do anything because they needed the blood test.  They told us to wait for the results but to bring Rose down anyway and they would check her over.  Nothing was done that day; the locum wouldn't do a BM as the nurse had gone home for the day.  She told us to wait for the blood test and the results.”

Parent’s intuition:
After the blood test, Rebecca took Rose for a McDonalds as a treat and to also try and get her to eat.  She felt like taking her to A+E there and then as she wouldn't eat it at all!  This was very unlike her.  Rose sat slumped in her chair.  Again, Rebecca told herself to wait for the blood results just like the GP told them to do.  

Diagnosis 3 - Correct
On the Friday morning they got a call from GPs to get Rose to hospital ASAP.  Rose's bloods the previous day were 40.6mmol/L.


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## Kei (Jan 4, 2010)

From what I've heard from other parents, and our own experience, some GPs need to be taught (or re-taught) about the importance of getting possibly-diabetic children seen very quickly!  If we'd seen another doctor in our surgery, F would probably have been sent to the hospital right away, instead of spending another day in DKA and getting so dangerously ill.    Most of the doctors in our practice are incredibly knowledgeable about diabetes, so it was our bad luck to see one who wasn't!


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