Severe DKA on admission -anyone else the same?

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KateW

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Hi

I'm new to the forum (though have already posted a reply) and relatively new to diabetes. My daughter, Alisha, 9 was diagnosed in Oct 2009 with Type 1.

We're largely fine and have pretty much got used to things though I do sometimes feel quite exhausted with it all - making sure there are regular snacks, meals, planning ahead so that we don't run out of lancets, strips, batteries etc etc (and in spite of my best efforts it still happens.

The diagnosis itself was really traumatic as no-one (not even the GP) picked up the symptoms. Alisha was extremely ill and slipping into a coma (severe DKA on admission to A&E) and even then we were made to wait several hours in A&E until a doctor saw her and she was rushed to resuscitation. She was in hospital and on drips etc for 4 days. The hospital staff were fantastic and really supportive though it was completely traumatic at the time.

As no-one (to our knowledge) in our family has type 1 diabetes it came as a complete surprise and I am amazed at the lack of general knowledge about the symptoms - GP, triage nurse at A&E did not suspect DKA. And I blame myself for not being more aware of the symptoms, though I consider myself to generally quite knowledgeable and aware (e.g. I think I could spot meningitis warning signs etc)

Of course with hindsight they were all there and had been building over the period of a few weeks but I really do think that more could and should be done to raise awareness of the warning signs of (a) Type 1 and in particular (b) DKA which is really very serious.

Interested to know if ours is an isolated story?
 
KateW said:
Hi

I'm new to the forum (though have already posted a reply) and relatively new to diabetes. My daughter, Alisha, 9 was diagnosed in Oct 2009 with Type 1.

We're largely fine and have pretty much got used to things though I do sometimes feel quite exhausted with it all - making sure there are regular snacks, meals, planning ahead so that we don't run out of lancets, strips, batteries etc etc (and in spite of my best efforts it still happens.

The diagnosis itself was really traumatic as no-one (not even the GP) picked up the symptoms. Alisha was extremely ill and slipping into a coma (severe DKA on admission to A&E) and even then we were made to wait several hours in A&E until a doctor saw her and she was rushed to resuscitation. She was in hospital and on drips etc for 4 days. The hospital staff were fantastic and really supportive though it was completely traumatic at the time.

As no-one (to our knowledge) in our family has type 1 diabetes it came as a complete surprise and I am amazed at the lack of general knowledge about the symptoms - GP, triage nurse at A&E did not suspect DKA. And I blame myself for not being more aware of the symptoms, though I consider myself to generally quite knowledgeable and aware (e.g. I think I could spot meningitis warning signs etc)

Of course with hindsight they were all there and had been building over the period of a few weeks but I really do think that more could and should be done to raise awareness of the warning signs of (a) Type 1 and in particular (b) DKA which is really very serious.

Interested to know if ours is an isolated story?
Click to expand...

It was exactly the same with our family on my diagnosis, Diabetes???, Whats that???.
I am the only one with it, I had extreme DKA and did go into a short coma, I woke up in intensive care with heart monitors, drips, taps stitched to my wrists and a central line in my jugular.
Was a HUGE shock to the family.
 
Hi Kate,

You have pretty much described my diagnosis. Saw two doctors in the three day run up to admission. Both of which sent me home with a "kidney infection" and told me to drink plenty of cranberry juice!

Yeah good one Docs! 12hrs after the 2nd appt, blue flashing lights, Bg and Ketones through the roof!

We also have no family history, they asked my mum if i was diabetic in A&E and she laughed and said somethign like "i think we'd know"!

Looking back i had signs for about 6 weeks. My mum is a head teacher and i was a trained veterinary nurse and we both missed the signs so dont beat yourself up. Its hard to look at your own family objectively.

Glad you found the forum x
 
Hi Kate

My daughter is 6, and her diagnosis (in July 2009) was almost identical to your daughter's. If you look in the "Parents" section on here, you'll find that there is a thread asking about diagnosis, and several of the stories are the same.

Big hugs to all of you! It's not an easy condition to be diagnosed with, as there's a huge amount to learn in a short time, but you do start getting used to it eventually!

Kei
xx
 
hi and welcome i cant relate to your DKA on addmission just wanted to welcome you to the site x
 
Hiya Kate

Sorry you have to be here but welcome.

Unfortunately your story is not isolated by any means. The symptoms are, for some reason not well known and they tend to get ignored which is horrendous. Even though everyone has heard of diabetes, it is the invisible disease and no-one who is doesn't affect understands it and GP's who should know forget about it.

Take a look at this website www.childrenwithdiabetesuk.org It was written by parents to parents. You can join an email list on from the home page. It is a busy email list but very very imformative and I consider all of them as close good friends now. If you ask the same question and post the same message you will be inundated with similar stories, it is a nightmare.

However I hope all is ok and that Alisha is doing well. My daughter is 9 as well and is on an insulin pump and doing fine.

Ask any question you want, no question is a silly question, we have all asked it. 🙂
 
sounds very much like my diagnosis :(
 
Thanks guys

Phenomenal. I'm amazed to hear from you all - I honestly felt we were the only ones....It's really heartening to hear that we're not alone and that I/my doctor weren't the only ones to miss the classic symptoms. Just hearing your stories is humbling and just makes me more convinced that there needs to be a lot more to raise awareness of the symptoms.

Would you believe our GP sent us home with laxatives - poor Alisha was so dehydrated she'd been constipated for around a week... Classic sign of dehydration as a result of the constant need to pee leading to dehydration...

Is anyone aware of any major educational initiative especially aimed at medical profession to raise awareness of symptoms (like those relating to meningitis, stroke, heart attacks etc)? If not, I really do think there's a gap that needs to be filled...after all this is a medical emergency that's obviously not that isolated from what you're saying...

Kate
 
I thought I'd already replied to this!

I didn't have a GP when I was diagnosed. I'd just never bothered to register, because I never really needed to see one. I got 'coerced' by my housemate into seeing someone, so I went to a walk in clinic after feeling like cack for over a month. I told them what was wrong (complete exhaustion, drinking about 6-9 litres of water a day, lost weight, couldn't concentrate, going to the loo all the time), and I distinctly remember the nurse I spoke to saying 'It's probably nothing. I can do a urine test if you want me to'. When she did a dipstick test, I got told 'well, there's quite a lot of sugar in that. You might want to go register with a GP'

Good thing I did, really. The nurse at the GP's did a fingerprick test on me, and my sugars were in the mid-high 30's. I got sent off to hospital from there. I got told that I was maybe a day away from coming in in a coma rather than on my own feet, because I was in DKA, and both ketones and sugars were just too high. I was in there on a drip for 5 days, waiting for my levels to come down.

Trust me, you're not on your own!
 
Hi, welcome to the forum. My diabetes had probably been coming on for some time - maybe 2 years - as I had a lot of the symptoms in hindsight. However, things came to a head when I contracted a stomach virus which wiped out my remaining insulin production. I thought the virus would pass in about three days, but I became sicker and sicker, lost 17 pounds in 2 days and ended up calling an ambulance. As I live alone, I was probably about an hour away from coma and not being found. I was in severe DKA and in hospital for 8 days. In my case, the doctor didn't really come into it as I got sick over the weekend and admitted on a Bank Holiday Monday, so couldn't go to my doctor.

There are lots of lovely parents here doing a sterling job supporting each other, and I am sure they will make you very welcome🙂
 
DKA not well known

Hi Kate,

DKA certainly seems not well publicised within the diabetic community.

I've been T1 since 1988 and have always attended Hospital clinics once or twice a year and had GP advice also two or three times a year .. and not once, to my recollection, was the need for DKA testing mentioned!

It was only when I did a DAFNE course last September that DKA was highlighted as a real threat and the need for testing if BG was over 13 mmol/l regularily or any time over 17mmol/l.

I now use Ketostix, on prescription, and so far the colours are good!

Hope things are going ok for you and that Alisha is doing well
 
Hi Kate

My son is 8 and was diagnosed in Aug 2009. I am lucky and work at a hospital and I spoke to a few of the nurses that work on the ward. They told me to bring in a urine sample, first thing in the morning. I did and it was full of glucose and ketones and rang my GP's to be told they couldnt get my son in for an appt till a week later. Fuming i rang my mum who sorted this out for me while I was at work.

The next day Jack was sent upto the out-patients dept for a blood test. we were rang at 12:30pm that day to be told that i must take J to the childrens ward asap. It was such a shock to be told Jack had diabetes as there is no-one in our family that has diabetes. We spend 5 nights in the hospital with J hooked up to a drip and a siringe driver with insulin in for the first night.

Sorry you have to be here but welcome, there are lots of helpful people on this site and will help you with anything as they have with me.

Gem
 
Hi Kate, welcome to the forum.
 
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