Anyone else with a diabetic DC? Fancy a support thread?

[Neenook]

That's it really! My DS (6.7) was diagnosed in June last year. We are getting on ok, but it would be good to chat to other Mum's and Dad's who are in the same situation, especially on the bad days IYKWIM. DS is on multiple daily injections of Novorapid and Lantus as the long acting. Would love to compare notes/share experiences/advice!!

Not a parent of a child with diabetes but i've had type 1 since i was a kid....i'm also on novorapid and lantus it's a good regime.

Obviously can't support as a parent but am always happy to offer advice in any way i can :)

Thanks paddyclamp
I've no idea if there are many Mnetters either with diabetes or with diabetic children, I know there was a thread recently about someone's DNiece, but haven't seen many other threads. I suppose there might not be much need...

Bumping for the evening...

Got a 10 yr old with type 1, i go on Diabetic mums uk on Facebook, only recently joined but seem friendly plus lots of mums on there with children on MDI (which my son is on too) as opposed to children with diabetes uk email forum where it is mostly about pumps. Lots of good advice and info! See you there?

Sounds good hungry. I looked at DWD forum and as you say it seems to be all about pumps - will check out Diabetic mums uk now. Thanks so much

My ds1 (11 today is type 1, he was just diagnosed in august.

He was injecting at first with novorapid and lantus but got a pump just before christmas.

I'm here for another half hour or so before i hit the sack if you fancy a chat

DD is 5, diagnosed Dec '10. On MDI, novarapid and levemir. No pump funding here (as yet). She is currently battling a virus (again), sky high temp, poor little thing.

Vanda how hard/easy was it to get a pump? Has it been much better? We've just been told that as DS is well controlled we are unlikely to be eligible as there has to be a 'recognised medical need'.

He is desparate to have one poor thing - hates all the injecting . We have been told we could self fund and the diabetes team would provide support but we're not sure it's the best option as he and his brother are quite 'physical' IYKWIM! Worried about it either being knocked/bashed about and that it will stop him being able to be quite as rough and tumble?

Where are you dewbs?
Poor DD - we haven't had any illness yet since DS was diagnosed...dreading it actually!

Neenok we're in rainy Cornwall! Had quite a lot of illness, I hate it, the diabetes makes it so worrying. Blood ketone monitor comes in handy! She's also had febrile convulsions just to add to my panic!(scarier than diabetes imho)

Poor thing...and you too!
We're in rainy Wales

its my Dniece!
she was in hospital last week with sickness :(

she is in rainy yorkshire! :o

I'll join you. My DD is diabetic (8 y o) diagnosed when she was 4. She only has 2 insulin injections per day (novomix) - I am unable to control her blood sugars on this regimen - they are always too high or too low so would like to chat to others for support. I find the whole thing soul destroying.

So sorry to see all these people wanting pumps, being denied. Makes my blood boil. If you don't fancy a pump, no problem. But if you do and can't get one, ooooooohhh that makes me mad. Postcode lottery.

Being on the mixed insulin was a nightmare for me (granted it was in the 1980s so things could have moved along a bit since then) - i had to eat at exact times and had a very restricted diet, felt i had no life! The injections were proper syringes too, anyone remember the orange caps?!

When i went onto basal bolus though i felt i got my life back!

I'm not allowed a pump because..get this..my Hba1c is too good :O ... Can't say i'm overly bothered as i don't fancy being attatched to a device all day! What do you do about clothes?

Diamond won't your Dd's health team move her on to MDI. I'm so pleased we started onMDI and didn't have the restrictions of the 2 a day injections. Not to say things have been perfect with MDI! Had lots of highs Nov and Dec so now we've got an accu-chek expert meter which calculates how much insulin for the amount of carbs including any correction which is needed is great and his levels have come down but then of course we get hypo's every day! If it was only as simple as matching food to insulin!

Hi my Ds was dx'd aged 7 and is now nearly 12. He has been pumping for 4 1/2 years and he also uses cgms, although we pay for the cgms.

I would urge you to look at the children with diabetes uk website and join our fab mailing list for the uk. I've made lifelong friends on there. Please do it via a separate gmail account though as you'll get swamped otherwise. The mums there talked me through getting a pump for my son and are a source of friendship and help for each other.

www.childrenwithdiabetes.com/uk/

Look forwards to talking more here or there. :)

Paddyclamp, that's exactly what we were told last week at clinic! DS has had some pretty extreme highs and lows, from in the 20's to 1.6ish - twice has lost conciousness (once after after swimming). Since Dec has been better though, HBA1c was 7.4 and results of a 5 day monitor were good so the consultant said we would not be eligible. Have had the same thoughts about clothes, activity (DS is 6 and quite 'rufty-tufty') and having to wear it constantly too.

Diamond MDI is giving us really good results at the moment, has taken some tweaking but last two months have been pretty good. We also have the Accu-chek expert - it made a huge difference being able to carb count effectively and correct hypers. Worth asking about...

Brambleshooks - I used to get the childrenwithdiabetes emails but found that 99.9% of emailers are posting about pumping so it wasn't a great source of info or very interesting to read when your child is on MDI.

There are lots of other Facebook groups which probably have a wider variety of members who talk more about MDI or 2 injections. Not every child is ready for a pump yet!

Accidentprawn how is DN getting on?

Glad you've found good support hungry. There are a few children on mdi on cwd and a couple who have changed from pump to injection. Its aboutfinding what's right for the child and the family. My Ds wouldnt part with his pump for love nor money but I appreciate that each situation is different.

I was forced onto a pump, in 1st pregnancy. I hated the idea of having something attached to me 24/7. Seems so alien. Buts its amazing how you just get used to something. Now I don't have trouble with clothes so much. Just clips onto my work trousers, or jeans, or a posh dress.
Now I can't imagine being without one. I am totally funded and I also have cgms, funded, unlike Bramble.
But I totally get how it might not appeal to everyone. Like Bramble's son, I would not be without it now.
But Neenook, it might be perefct for a rough and tumble 6 year old. I think youmya be surprised.
But it bothers me that its all about pumping now. Like on all the websites, if your not pumping, your like a second class citizen. Thats so wrong.
And I just HAD to comment on hungry's comment about if it was only as simple as matching food to insulin.
But thats the thing isn't it? Its not, and no one who doesn't have a diabetic child, really understands that. Diabetes is soooooo complicated.
Just as you think you have it sussed, something happens, that throws you offwind. You see a pattern emerging in your blood sugars, everday at 5pm your too ...high/low/whatever ,and then the next day, wham your not.
Emotions affect diabetes. When you are really happy or really stressed it can send your diabetes mad. How exactly could you explain to someone how to manage that? You can't.
All we can do is try.

I know Oblomov - we're off to clinic today and I was just going to write down the timings of all his many hypos's to see if I could find a pattern and I gave up - no pattern at all, 1 morning we have a 2.4 1 hour after breakfast the next day after the same breakfast its 15.3!!! You drive yourself mad looking at all the figures, see if the Dr has any answers

Oblomov Yes ,yes yes!!! I've lost count of the number of 'I've cracked it' moments I've had only to find everything's gone to pot the next day - DS has only been diagnosed since June.

I still can't seem to get it that there isn't going to be a 'Eureka - we're in control time'. So frustrating to be constantly struggling with the numbers and still feeling like it's all a bit hit and miss. Thought the pump was the solution but that seems to be way off the radar now anyway....

niece is getting on fine.

she has had two hypos today - one at 1.3 her lowest yet. she has a clinic appt next week.

is that normal? is it ok?