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Original poster

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

82 replies

lulurose · 30/08/2007 19:27

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

OP posts:
Original poster
lulurose · 08/09/2007 19:59

Hi Paddy, thanks for posting, its great to hear first hand from someone who has grown up with diabetes.

Tess woke up today with the cold we've all got so she was fed up today but we kept a closer eye on gluc levels and tested wee and shes gone to bed reading 8 so I think we should be ok...will check her again before we turn in.

Thankyou all for your encouragement, it has been invaluable xx

OP posts:
Original poster
lulurose · 08/09/2007 20:03

btw, my Mum is having guilt trips at the moment as she has overactive thyroid problems and we were told that both conditions are related.

Sorry if its too personal paddy clamp but when were you diagnosed? Have you had fairly straightforward pregnancies?

I think you are right about us all being healthier, although we have always cooked from scratch we are already making small changes that will pay off health wise for all of us x

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paddyclamp · 08/09/2007 21:31

Not too personal at all ask away! I was diagnosed at 9. Got very ill very quickly, a week before i was diagnosed i drank 4 x 2 litre bottles of pop in a morning! Slept all night, walked downstairs and slept on the couch all day! And still the GP told my mom she was being neurotic!

The good thing for Tess is that she's very young and even tho that's harder on you it will be easier on her. I remember having to adapt, having to have my friends and teachers told etc. And back in the mid 80s diabetes was nowhere near as common and the diet much more restricted than it is now.

Don't be alarmed if her levels shoot up when she has a cold or any sort of infection as that's normal.

I had 2 healthy pregnancies. Got monitored v carefully esp with DS, my first one. Both were on the big side esp DS. In labour i was on drips to deal with insulin and glucose requirements. Was told i could have had elective sections if i wanted.

Now that i'm an adult i really don't have a sweet tooth at all. But i do drink wine!

Is Tess on novorapid and levemir?

tangarine · 09/09/2007 18:50

Paddy,

Wise words indeed. My ds was just 5 when he was diagnosed, and he doesn't remember life before diabetes. Ds2 was 8 months old so has grown up with it and, if he wants sweets, tells us he's having a hypo .

Lulurose,

Research has show that in order to inherit the predisposition to diabetes that, when triggered, develops into T1, a child needs a gene from each parent. I spent a long time blaming myself for ds's diabetes, as my Dad has coeliac which is also related to diabetes and I therefore assumed that I was "responsible" for the diabetes. It sounds odd, but when I find out it wasn't all "my fault" - only half my fault - it was a relief. We don't know of any autoimmune conditions on dh's side of the family but they must be lurking around somewhere . Don't forget as well that Tess might have lived happily with her genetic make up without developing diabetes - lots of people do - she needed the "trigger", which nobody can agree what it is to set it off. I hope that makes sense.

Original poster
lulurose · 09/09/2007 20:48

Hi Paddy, yes Tess is on x3 novarapid after meals and 1xlevimer in the morning. Great to hear your experiences, of course I am grateful that Tess is now feeling better and I know it could have been something much more serious...we've had a better day today.

Tangerine, hi, I didn't realise that it comes down through both sides...that is interesting as my dh has no history at all on his side. Regarding the trigger, Tess had a nasty viral infection with heavy cold like symptons in June so perhaps that was when....anyway thankyou for sharing, its great to hear other perspectives/experiences x

OP posts:
paddyclamp · 09/09/2007 21:11

That's the same regime as i'm on luluros. Good that she can have the novorapid after meals as if Tess doesn't eat her dinner you don't have to stress about insulin that's already been injected. A lot of people have to start on the mixed which is much more restricting. Glad you've had a better day. How's your other daughter coping?

Tangarine your story about DS2 made me laugh, my brother (one year older) used to be exactly the same, he was never hungry he was "low". It also made me thing of how i pretended to feel low when we were out shopping so that i'd get biscuits or sweets!!

Original poster
lulurose · 09/09/2007 21:19

Yes, they initially did say before meals but because of her age and te fact that she sometimes point blank refuses her meals we decided to go for after, takes the pressure off a bit.

I think tess is still a bit young to realise the connections between biscuits and low readings but i'm sure we'll have all that to come! Milly my older dd is very curious regarding the blood testing and the injections and we have tried to explain to her in simple terms whats going on. She is a bit unsettled but I guess that is to be expected, she started nursery last week so lots of changes.

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Spidermama · 09/09/2007 21:30

Hello lulurose. Hello everybody.
Sorry to hear you're dealing with this lulurose. My ds was diagnosed at the age of five a year and a half ago.

It really is great that she's on levemire and novorapid already. I'm having to argue for this with our team but they want him to stay on Mixtard which means we're less spontaious and often having to 'feed' his insulin.

Part of the problem is that they don't think he's old enough to be injecting himself at school, but they're coming round.

I know Millie has mentioned the email group to you. It's a great source of information and support.

All the best,

Spider. x

Millie1 · 09/09/2007 22:01

Hi Everyone

Spider ... I'm interested in your comment regarding school. If your DS gets onto basal bolus, how would you cope with the lunchtime injection? We've talked to our clinic about changing from Mixtard but one of their first points against basal bolus was around the lunchtime injection. However, all not lost yet as they're still willing to talk about it.

Lulurose ... we've no history in our family (well, except for N's great-aunt who developed late-onset T1). Anyway, N had a very nasty dose of scarlet fever just before Christmas last year. One month later ... hey presto he has diabetes. Coincidence?

tangarine · 09/09/2007 22:46

Hi Spidermama,

Have you talked to your clinic about a pump (would get round the lunchtime injection)? Ds is always happy to model his. Let me know if you are in our neck of the woods. We didn't come down your way all summer.

tangarine · 09/09/2007 22:53

ps. ds started self-injecting at the age of 6, nearly 7. He took packed lunch to school so always had the same food so apart from a correction if he was high always had the same insulin. And for tea I gave the childminder a list of menus with about the same carb count. He started because he wanted to go for a sleepover and didn't want his friend's parents to do the morning injection (both are in the healthcare field so didn't have a problem doing it).

I used to do all the other injections, as I figured he'd be doing them for the rest of his life so I might as well take as much of the burden as I could while he was little.

Original poster
lulurose · 10/09/2007 14:08

Hi Spider, I didn't know the regime dd2 is on is a good one or not, I just kind of accepted it and know nothing about any of the others referred to.

I guess we are a while off school yet so will have bridges to cross later but i'd assumed I would have to either go in after lunch and do the injection myself, or, train a willing welfare assistant or nursery nurse to do it. I am a primary teacher, and seem to remember this was the case a while back when we had a little boy with type 1 at the school.

I was supposed to go back to work in December but will probably delay this for a bit now this has all happened.

Hope everyone else good x

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Spidermama · 11/09/2007 22:19

lulurose different areas have different approaches I find.

How are you finding the injections with your dd? I guess the blood tests are harder because I think they sting more. I've put the pen needle in myself to see how it feels and it really isn't bad (that said I do have some, ahem, extra padding on my thighs ), but when I try the finger pricker it seems to sting for a while afterwards.

Tangarine I'm in London all the time at the moments but I commute, work, then commute again so there's no stopping time. Also I never have DS with me as he's at school. I'm sure we'll get together some fine day.

Millie ds now says he's happy to do an injection by himself at school. I'll try to get him onto the basal bolus next time he has his check up (next month) because, if nothing else, they won't support my pump plans unless I try this first.

Spidermama · 11/09/2007 22:20

btw have you all seen the diabetes film of the little boy on youtube.

< sob >

It certainly got me sniffling, but it was quite uplifting too in a funny sort of way.

Original poster
lulurose · 12/09/2007 14:30

Have just watched it, the tears are still rolling. First time i've seen a pump being used, they look brilliant. x

OP posts:
Original poster
lulurose · 12/09/2007 14:33

spider, my dd is being really brave with the injections, sometimes cries, sometimes doesn't. We now give the levemir and 1st novarapid of the day together quickly after breakfast which helps me too as I know we have half the jabs out of the way for the whole day. She doesn't seem to mind the blood tests yet.

x

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tangarine · 12/09/2007 20:27

Hi lulurose,

Glad things sound to be OK in your house. Ds says he doesn't feel fingerpricks (which I think are worse than injections) any more.

Spider,

That sounds like real progress. Hope you get what you want from clinic.

We're doing the JDRF "Walk to Cure Diabetes" on Sunday in Greenwich www.justgiving.com/teamdanielle. Let's hope it stays dry.

paddyclamp · 13/09/2007 19:19

Fingerpricks hurt more! I don't feel injections anymore, not with the pen anyway. But on the odd occasion i've had to use a syringe they stung in comparison!

Usually don't feel fingerpricks either unless you happen to do one in the same place you've recently had one - ouch!

One thing i do hate is when they take vein blood, i have to lie down!!!! But they can do a HbA1c from your finger now, that's only recent!

tangarine · 13/09/2007 20:05

Hi paddy,

At Kings they used to take blood for the HbA1c from ds's ear-lobe, which always made me feel faint. Apparently there are no nerves there so it doesn't hurt.

Spidermama · 14/09/2007 00:08

The weather looks good for sunday tangarine according to Peter Cockroft. Have a good day.

mears · 14/09/2007 00:11

don't want to hijack thread - anyone with teenage advice pop over here - ta!

paddyclamp · 25/09/2007 19:47

Hey Lulurose how's things?

debbie26pet · 30/09/2007 19:24

hi not sure if this been said my daughter was diagnosied at 2yrs old last nov she is on nova and levermere and is gonna be starting apump next mth u can give me a shout if i can help with the milk we water tiegans down she loves milk to take to bed so we add warm water to it and she has it at 7.30 at night and with a bit of learning etc which u will get alterin insulin etc she still can have ask them how to do this let her still have her milk. she can have about 250 mls i think it is then after that u to count it all sorry if rambling and will check the 250ml
my email is [email protected]

tangarine · 30/09/2007 22:02

Hi Debbie!

Was thinking about you the other day as I hven't seen you on CWD for ages - how are you doing? Any news about a pump for Tiegan?

tangarine · 30/09/2007 22:03

Oops, just read your post properly. That's great news about the pump. Keep us posted on CWD!