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!!

Reading threads like this makes me really sad in a way...as a kid i never ever got how stressed and worried my diabetes must have made my mum! I really had no idea...on the bad days when my mum used to suggest things i used to lose it with her and think what the hell does she know, it's me who lives with diabetes..but i was wrong to think like that :(

Prawn that's pretty low - sound like something might need adjusting. DS has had 2 hypo's where he's actually lost conciousness (both after swimming) and they were in the low 1's, she must have been really woozy bless her.

My dd 10.5 years old, is type 1 (diagnosed at 3.5) and we are waiting for a pump which they have offered to fund but they will not fund cgm which she needs as she has no hypo awareness at all and drops off a lot overnight and fits as a consequence. Really frustrating and everyone urging me to just take the pump and shut up about it but I do feel given her situation she needs that monitoring even if it is short term during the running in period. It will mean me having to get up several times a night to test her (I do have 3 other children and am pregnant with dc5!) Just feel I need to hold my ground to get her the help we need for her. The thing is that this effects our whole family and I do think when they are dishing out funding the circumstances need to be taken into account.

Currently she is on Levemir and novorapid basal bolus regime, on Lantus she lost all her hypo signs and it didn't work that well for her as it seemed to be absorbed in her rather irregularly. Levemir absorbs differently and is working a good deal better

All these years in I am still a basket case about it, again like others have said, you think you have cracked it then it all buggers up again for no good reason. Feeling that puberty is coming is pretty scary too so hoping to get her pump and cgm in place asap so she can start senior school in sept with it all sorted.

Oblomov, was it you who had issues re. your driving licence? Have i got that wrong? Apologies if I have you confused. If you did you get it resolved?

Prawn, i have replied to you on your other thread

Brandy, yes it was Oblomov - was chatting to her about it the other day! Such a horror story, i'm now very economical with what i tell my endo about hypos!

she has a clinic appointment next week. Should sis ask for her regime to be reduced??
TIA

i would just drop her lantus slightly...if i have a day where i have lots of hypos i always reduce my night time insulin, i don't have to ask the clinic to do it so they should be fine with your sis just changing it

problem is that as she's in the honeymoon she'll still be making some of her own insulin which is why she's having all the lows

it's not right that she's low so often so something def needs tweaking...do you know off hand how many units she takes?

not off hand no.

Sis has rung them to see if it as at all possible to bring it forward at all.

if she phones the diabetes nurse then they should give her the go ahead to reduce it

My DS has had T1 for 5 years and is 8 now. We did twice daily mixes, then MDI and he now has a pump. It's wonderful and gives us freedom we've never had before in terms of what and when he can eat. The pump is a wonderful tool - to be able to tweak basals at a moments notice, easier to manage sickness etc, and his HbA1c has dropped nicely since starting on the pump. We worried about the 24 hr attachment perspective and also about how the pump would cope with rough and tumble play - no worries on either front. Diabetes still does its own thing though no matter whether you think you have something sussed or not.

The Children with Diabetes mailing list has been a lifesaver for us and we've learned so much from it. Please don't be put off by the quantity of posts relating to pumps and sensors, there are still many posts from people looking for advice re other regimes and remember that most of those on pumps have done MDI etc so have a wealth of experience to share.

Hello Neenook, welcome to the wonderful world of diabetes! My 3 yo son was diagnosed at 13 months and within a week had a pump. It's fantastic for him as we can give tiny doses of insulin therefore it's easier to tailor it to his needs rather than the other way around. With regards to clothes and being active, he does everything any other child does, obviously the pump has to be disconnected before swimming but otherwise he wears it all the time and doesn't seem to be aware of it. I've made him a few little pouches like a mini bum bag and have had to make one for my dd as she was jealous! Something else worth considering is a medic alert bracelet, a good friend pointed out to me that if ds was in accident or if we were unable to speak for him then medical staff would have no way of knowing about diabetes even if they did spot the pump as many don't know what it's for.
Do have a copy of the carbs and cals book? Is brilliant for working out how much they've eaten, is also quite amusing to see carbs in massive portions in pictures! Is also available as app for iphone which has proved useful many times when we're out and about.

Hi Tidy Carbs and cals is my bible!!! Am inheriting DH's iphone at the end of Feb - mainly excited about getting the app...how my life has changed!

Hi neenook, sorry i haven't been back, it's been a bit hectic this week!

It was very easy for ds to get a pump, he knew from the start (dx aug 2010) that he was eligible for one, the pdsn told us while we were still in hospital that the pct in this area funded them. But, ds wouldn't even talk about pumps in the beginning but after a while the novelty wore off and decided to get the medtronic pump. For 3-4 weeks before he got it he was having highs all the time, usually high teens to mid twenties - i dreaded having to do his bloods then within 3 days of getting the pump, his bloods were mainly fine, a little tweaking was needed but not much.

He has his cannula in the stomach area and a small leather pouch was provided which clips onto his trousers and he just pulls his sweater over the top. I would imagine it'd take a LOT to pull it out - i may be wrong but i thought pumps were given to toddlers at diagnosis, so I don't think it's a problem for rough and tumble play.

I love it because ds is a snacker. All we do at snack times is enter the carbs he is having, then at the next meal time the pump takes into account insulin on board and deducts this from the bolus it calculates he needs from his meal and bg, same if his bloods are low. Ours is set to correct to 6 so if he is below 6 the pump takes it into account and deducts the amount accordingly.

It's so frustrating that some people have to fight for things like this, it shouldn't matter where you live

DN has had her clinic slot pushed forwards to first thing on monday. They are looking at changing her insulin and her regime.

I hope she is ok and nothing is terribly wrong!

Prawn... don't worry there won't be anything terribly wrong ... i'm pretty sure that all this is because she is in the honeymoon faze .... it will all settle down

I can't compare my diagnosis with your DN because i was much younger at diagnosis than she was, but they do seem to have given her an awful lot of responsibility very early on (by they i mean her diabetes team not your sis - it sounds like your sis is spot on!)

On the postive, the complications that can occur due to long term diabetes are as a result of sustained highs NOT hypos

Yes prawn. Please don't worry. As paddy says, you are only at the beginning of a very long journey. You aren't even in the honeymoon period yet. You are in the crash-shock period. And therefore, you are doing incredibly well. I think it takes a very long time to really sink in the true effects of diabetes. It changes EVERYTHING. Your child, your family dynamics, YOU. It changes everything.
I totally get what Paddy said earlier. she had no idea what effect it had on her mum. It had a huge effect on my mum too. and our relationship.
Its easy for me to say now, because i have lived with it all my life, but believe me, you are doing SOOOOOO well already.

Hi Oblomov :) .... think it's also worth mentioning that my diabetes also had a big effect on my brothers, especially the middle one ( have 2 older brothers ) as i guess their lives changed too .... my middle brother said that he got completely ignored :(

I won`t worry...
:)

paddy she was 57 when diagnosed.