Calling Spidermama: Diabetes

[LillyPink]

Hi

Posted a few days ago about dd drinking and weeing a lot and my suspicions were confirmed, she is diabetic.

Have been in and out of hospital all weekend, and things seem very wierd at the moment, we are trying to adjust to this news.

Her b/m was 30 when she was admitted and the nurse said she was amazed she was so lively!

Would love to talk to you or anyone else with diabetic kids for reassurance and advice etc!

Spider he's not always been fit. he's started running in the last 7 or 8 years. I think he does realise that his health is precious. And actually, people with diabetes see very clearly the results of abusing their bodies.

Puddle if you have any contact details for the Woodcraft Folk at Fiveways I'd be very grateful.

any woodfolk info re older kids?I have tried to contact them but no luck and ds is v keen to go

noddy they've been ignoring my emails too. My guess is they're either full up or so laid back as to be disorganised. I will persevere though.

What did your mum do about Easter Eggs RachD?

What will you do for your dd Lilly?

Hi Spidermama

I was going to shell out on a diebetic choc easter egg, but according to diabetes Uk, we should buy a normal easter egg, and let her have a moderate amount eg after a good dinner.

So I'm going to get the best easter egg I can find!! And one for her little sis. Their grandparents/aunts etc are going to get them a little gift rather than eggs. Which is actually a bit of a relief as we always end up with far too many eggs anyway.

Don't know if you have tried it btw but there is a no added sugar Angel Delight that DD had for afters the other night and she loved it!! (Would never normally buy angel delight, but she was so chuffed!!)

Puddle - thank you for posting that. Its so great to hear things like that, it really is. Thanks for posting it again for me.

I have put DD's name down for a local gymnastics club, as she is very good at that sort of thing. I want her to have a 'hobby' that she can get into and maybe (fingers crossed get a bit of a passion for)

SM, am being very nosey here, but who are the Woodcraft Folk? They sound like a secret tribe of magic pixies or something!!!!??

I just wanted to tell you about a new management sytem that I've been using for the past ten months: it's too complicated for little ones I imagine but shows that life in the future will be no different for your DS than anyone else.....
It's called DAFNE (Dose Adjustment For Normal Eating) and is the only type of type 1 management in germany, its been used successfully for 30 odd years there. Basically you attend a week long course during which you are taught about estimating the carbohydrate in foods, effects of illness or exercise and a whole load of other stuff and then you can literally eat whatever you want whenever you want to. It involves regular monitoring of blood glucose (you'll be doing that anyway) and I've found that I'm much more atuned to how particular foods and/or activities affect me...overall it gives much greater freedom to suit yourself. Just thought I'd tell you about it cos it's fairly new in the UK, only about 20 or so diabetes centres doing it at present but the number is growing all the time. There's more info about it on Diabetes UK site but as I say it's probably worth knowing about for the future.

Wow! Thanks sunnyside. That looks really exciting. We could certainly do with some form of management which allows more flexibility than we're currently getting.

Lilly the Woodcraft Folk is a group a bit like brownies and guides but for mixed boys and girls and without the religeous and God-Save-The-Queen-ish aspects. I've been trying to get in touch with them with a view to joining in but to no avail as yet. We love outdoor stuff, climbing trees and camping so thought it would be good to join a club with people doing it together.

I'm daunted by Easter. I've bought him a choc buttons egg but I don't rate my chances at getting him to eat it bit by bit. He gets very emotional if he can't have stuff that the other kids have. The other kids get upset if they're denied things because of him.

Emotionally he has got much better of the past couple of weeks. He does keep having bizarrely high readings though, followed by hypo or near hypo readings so it's a bit odd.

I don't know about your team, but we very rarely talk to ours now. They were great at supporting at first then seemed to just cut us adrift, which I suppose they have to do. We're seeing them on April 12 and ds will have his coeliac test then. (Gulp!)

Yes that is very interesting, thanks SunnySide!!

Spidermama - I don't know what coeliac disease is, actually. Is it linked to diabetes? I hope your sons test comes back OK. Our nurse calls us every couple of weeks at the moment, and of course if we had any questions we could phone her. I am still waiting for an appointment though for clinic.

I expect it will be hard to ration the easter egg, though DD has accepted the lack of sweet stuff quite well so far. And luckily DD2 is only two, so has adapted to DD1's snack times/eating Ok (though she gets sweets occassionally while DD1 is at school!!)

I don't know how old you other kids are, but I imagine it would be really hard if they are older than your ds. Kids don't understand though do they. It must me hard to say no to ds and then have pressure from the other children.

Perhaps you should get him a five pack of little bags of buttons so that you can spread them out a bit more, and a special toy to make up for the lack of egg!

A book I was reading suggested 'secrets (not sure I agree with this) where you have a 'secret' with diabetic child eg just the two of you go to the cinema, and with the non diabetics, say have some cakes when ds is not around. Easier in words than in practice I imagine. And kids aren't exactly good at secrets are they!

Thanks for clearing that up on the Woodcraft Folk. What a quaint name! Sounds good though.

I can't wait for summer, but in anothe rway I'm not looking forward to it because the nurse warned us her diabetes might become quite unpredicatble due to playing in the garden, etc. Still, if they are running about a lot, they might be able to get away with an ice cream or something!!

Sorry to hear your sons readings are erratic at the moment. DD's have been surprisingly stable. So much so that I'm worried I am getting a bet complacent, and will be shocked when they do start changing. However she did go down to 3.2 the other day for no apparent reason, but apart from that has been fine.

ps - what happened about your sons blurry vision?

Hi lilly,
He's still reporting blurry vision now and again. He also says he gets pins and needles in his feet. I don't want to attribute everything to the diabetes but my list of questions for the consultant is getting longer every day.

Hi Guys
Very interesting to hear from Sunnyside - re DAFNE - I have been on a DAFNE course and am going on a refresher in Sept - brilliant - gives you so much more freedom in life.

Re Easter eggs - Yes, like lilly, my mum bought me a normal one - generally most diabetic chocolate is not that much better then normal - and tastes RANK !!!!! - Its hard to make your children understnad that they are only allowed a bit - and I mean that kind of 'control' is the hardest / most heartbreaking part of having a diabetic child.

But we,all continue to strive for.... normality !!

I am forever impressed at how well you 'girls' do

can I ask what your dp does about alcohol? My dp was diagnosed a couple of years ago with Type 1, aged 29. He generally manages his diabetes very well, but he has had the odd alcohol-related wobble (several high blood sugar readings, esp after champagne , but more worryingly a couple of hypos ).

It really worries me, and I've ended up grilling him before nights out about what he's going to eat, how he's going to get home etc. I hate myself for doing it, but am not sure how to be calm about it iyswim.

can I ask what your dp does about alcohol? My dp was diagnosed a couple of years ago with Type 1, aged 29. He generally manages his diabetes very well, but he has had the odd alcohol-related wobble (several high blood sugar readings, esp after champagne , but more worryingly a couple of hypos ).

It really worries me, and I've ended up grilling him before nights out about what he's going to eat, how he's going to get home etc. I hate myself for doing it, but am not sure how to be calm about it iyswim.

Hi carolina
Well....he doesn't drink beer any more because the sugar in it sent his blood sugar rocketing. He tends to drink wine mainly and it's generally with dinner and maybe another glass afterwards. Yes, thinking about it he just doesn't ever get very drunk any more and when he does drink he finds it harder to control his sugar levels the next day.

He's actually very sensible about it but he's had the condition a lot longer than your dp. I would try hard not to worry too much if your dp is generally well controlled.

Thanks Puddle.

We had one distressing incident where dp couldn't find his way to the station to get the train home (this is the route he walks every single day after work, only about a mile). He was lost for about 2 hours. I kept calling his mobile but couldn't persuade him to eat any of his glucose tablets .

Still, I think this was a learning experience for him and helped him work out where the boundaries are.

He doesn't drink beer at home now either - just wine with a meal and the odd pint when we go out for lunch.

God Carolina that is worrying. I think you're right - they have to go through some of these incidents though to learn what happens if they are not well controlled. Dp was diagnosed when we were at university and I think I missed some of his scarier moments in the early days because we weren't living together at the time.

Does your dp wear a tag? My friend who has diabetes has a necklace explaining that if she's acting starngely it may be becasue she has diabetes - I do wonder whether DP should have one too (he has a card in his wallet).

no, he doesn't wear a tag puddle - doesn't want to. He has a card in his wallet but it is hidden behind credit cards . In that sort of state he comes across as rolling drunk, so I'm not sure that strangers would see beyond the obvious and think to look for a tag or card anyway unless he actually collapsed.

I hope in time he'll be prepared to wear one, but atm he is very much into not letting his diabetes become an issue - he'd rather people forgot about it iyswim. I can sort of see what he means - I had a colleague who seemed ruled by his diabetes, but he was a bit of an odd bird anyway.

Anyway, sorry for the hijack! SM and LP, please don't let this worry you - the incident I described was caused by dp having a couple of whiskies which he should have known not to have . It won't happen to your children cos they'll know better by the time they're old enough .

Don't apologise for hijacking. I'm lapping up any stories from people about diabetes at the moments and I'm sure lilly is the same. It's fascinating getting a look at what the concerns are for those who've had it longer.

My nephew has his referal for the peadetrician. He has to go on Tuesday morning so hopefully we will know more then.

how are your wee ones spidy.
didn't mean to scare you yeserday!!! I re-red my post and it sounded like a school teacher but I have had some bad experiences of what happened and I would not wish that worry on anybody!!

No worries chaps, they're fine. I was already back from A&E by the time I read the posts. Actually there is an update which I'll put on the other thread.

Its so interesting to hear things about adults living with diabetes. Keep them coming!!!

SM - Can I ask, when you take ds b/m at bedtime (if you do) what level are you happy for him to be at iyswim?

ps have just bought a Freestyle Mini blood meter and it is fab!!! (Boots - £17.) It only needs a speck of blood. much easier...

Hi lilly,

I will have a look in Boots for this meter. Is it out on display or do you have to ask the pharmacist?
I wonder if it's the same one I saw today. The stick pings out when you press the side.

I took ds to a soft play area to meet a group of other mums and their diabetic kids. Sort of like an ante natal group but a diabetic group. I had a really good time. It was so nice talking to people who knew exactly what I was on about. DS really bonded with a couple of the kids and they were discussing diabetes and showing each other their meters!

Lilly I play it by ear as regards bettime readings but I like them to be over 5.

Hello SM!

That must have been great to talk to other mums with diabetic kids. How did that come about? I've chatted with a few other mums. It is very nice to share experiences.

I've been fretting a bit over DD2 the last few days - she seems to be drinking and weeing more. I've tested her wee but its fine. If I took her to the doctor that is all they would do too right? Perhaps I'm just paranoid!

I don't think that the meter you saw is the same one. I don't know how to do links but if you google Therasense Freestyle Mini you will find out more. I think it was just on the shelves at Boots, her dad got it. Its really good, though I don't like the 'pricker' that comes with it so we have stuck with the other pricker (cannot think for the life of me what they are actually called!!!!) for now.

How long till your clinic appointment. I read on one website (though may have been USA) that a coeliac test is recommended for all diabetics.

I'm still waiting for our appointment think I will speak to oyr nurse in the next week to find out when it will be.

Wonder where rachD is?

x