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thread for parents with diabetic children

(58 Posts)
busybee20 Fri 16-Nov-12 19:43:17

I thought i would start this thread as my little princess has just been diagnosed with type 1 diabetes. Our world has turned upside down overnight. Carb counting, finger pricking and injecting insulin has become our life now. I still cannot believe how literally overnight things have changed.

busybee20 Tue 20-Nov-12 00:22:04

Thanks gallopy. Feathery does your ds use levemir insulin at night time? And if so how many units, at the moment dd is on 2 units. I have noticed that dd takes alot longer to fall asleep nowadays . I wonder if the insulin has anything with it.

BerthaTheBogBurglar Tue 20-Nov-12 12:37:16

Ds2 had the flu jab, didn't notice any side effects. I had it too (asthma) and my arm was sore for a week! He said his wasn't though.

Busybee, how long has it been since diagnosis? Its a huge change for your dd, and she is old enough to get anxious about it - maybe that is affecting sleep?

If she gets a cold you may find her numbers go up, and then down a bit when she is better again.

poshfrock Tue 20-Nov-12 12:46:40

My DSS ( aged 12)was diagnosed earlier this year and we are still finding our way.
Are you aware that you may be entitled to DLA ? We were advised to apply by the diabetic nurses at the hospital. It is not means tested. There is a really good guide on how to complete the forms on the Diabetic UK website.

Featherything Tue 20-Nov-12 14:37:24

Busybee- he just has the novorapid before his breakfast and before his evening meal, he has either 3/4/5/6 units, depending on all sorts of factors! Even the weather- wet play/dry play at school.
I find his blood sugar seems to regulate itself during the night and he always wakes with readings about 5.5.
I haven't noticed the insulin affecting him as such, but he obviously has emotional difficulties and gets really 'fed up' with having injections. How does anyone else cope with this with their children?
Also, there are no other diabetics in his school and that gets him down because he's different.
He's had a tough year this year, he'll be getting spoilt this Christmas! (I've already got him the Playmobil advent calendar instead of the usual chocolate one.)

servingwench Tue 20-Nov-12 17:20:01

My nephew had the flu jab...I had it too (work in NHS) and my arm ached afterwards!
Has the honeymoon period been discussed/explained to you?
And yes DLA! My nephew was awarded it [smiles]

kpandthesunshineband2 Tue 20-Nov-12 19:04:34

My son hated injections & we ended up with a star chart for having an injection quickly with a lego prize after so many stars. He eventually got better with it all but now loves being on an insulin pump with just a 'needle' ( a cannula insertion) every 2-3 days. It also makes meals much less stressful as he would refuse seconds or pudding as it meant another injection but now with the pump he can bolus as many times as he needs.
I would second the book recommendations - both very good. Ragnar Hanas book is good for dipping in to.
Feathery - are you carb counting & injecting for all meals? I notice you didnt mention injecting for lunch.
It is great to meet up with other children with Type 1. We have just been to a weekend conference called 'Friends For Life' which is great for the children to be with others. That is part of CWD. There is another conference coming up in April in Glasgow.
If you go on the CWD email list you may find other families living near you who you could meet up with too.
JDRF also run discovery days where there arte usually talks for adults & activities for the children together. So have a look on their website.

Featherything Tue 20-Nov-12 19:42:33

Kp, no, just before breakfast and dinner, it's just how we were advised. Not so much detailed carb counting, but definitely portion sizes are generally counted. We weren't encouraged to carb count, but I think I may have to look in to it in more depth. Do you think it makes controlling bg easier? I find it hard to manage the physical activity more than the food side of it! Sometimes he's tearing around and sometimes not, and that massively affects his blood sugar.
I'll definitely check out those websites and try and get more involved, I just find it difficult to throw myself into things- but I know it'd benefit ds massively.
Star chart sounds good, he gets rewards for being good with things, but I may need to tie it in directly to the injections. I imagine he'll cope better once he gets older and can inject himself. But just thinking of him being older makes me panic as I'm sure there'll be a whole new host of challenges!

Featherything Tue 20-Nov-12 19:48:04

Serving, yes we definitely experienced the honeymoon. His units went right down then crept back up again!

Onlyhappywhenitsnows Wed 21-Nov-12 09:48:43

I've been diabetic for 20 years, diagnosed aged ten. It's only now I have my own child that I realise it must have been much harder for my parents than it was for me. My dad is also type 1 so I confess to checking my three year old fairly regularly just in case even though a genetic link is only one of the risk factors that may be involved.
I now have an insulin pump and it has changed my life. I believe NICE guidelines in England are that children under 16 have to be given the option of an insulin pump and I would say if you do get that option then definitely give it a go. I wish I could have had one sooner (had it nearly 5 years now). It has made things much much much better and everyone I know who has one says they would never go back to injections.
The other thing I would mention is vitamin b12. We have never been told about this at the hospital but my dad attends meetings and groups through diabetes uk and although research is continuing there is suggestion that being diabetic makes you deficient in vitamin b12 which in turn makes you more susceptible to diabetic complications. I'm not sure how much a child would need to take but I now take it as I figure that it certainly won't do any harm and you can't have too much of it anyway.
Please feel free to pm if you have any questions about the insulin pump.

paddyclamp Wed 21-Nov-12 19:46:06

I feel like i should give the pump a go onlyhappy but i'm put up with idea of being attatched to it all the time. How do you find it?

Onlyhappywhenitsnows Wed 21-Nov-12 21:43:27

It put me off too, I resisted it for a long time. It was only wanting a baby that convinced me to give it a go so I'd hopefully have better control in pregnancy and now I wish I'd done it sooner!
You forget that you're wearing it to be honest. Also I belive pumps have got smaller and lighter since I had mine (mine is a bit like having an old phone now, I can upgrade next year!) so it's probably even easier with a newer pump. And there's quite a bit of choice as to which you want. Or there should be. It's a bit pct dependant.
You can get all kinds of things to wear it in if you want to wear a dress which is harder to wear than trousers but you end up being quite resourceful. I think about my diabetes less now than I did before, even though I am attached 24 hours a day. It's not perfect but for me the benefits massively outweigh the negatives. And if you tried it and hated it them you've not lost anything. You can go back to injections.
It is a much better system as it responds more quickly and reduces the risk of bad hypos. My hba1c is 5.7 (I know they are measuring it differently now but the new system means nothing to me so I always ask for it in hba1c format!)

paddyclamp Wed 21-Nov-12 22:51:17

That's a great a1c! I don't get the new way either so still think the same way as you. My last one was 6.4 and i read that you have to have an a1c over over 8 to get one on the NHS as an adult ( i know it's different for kids ).... Also i don't have much in the way of complications to speak of..just had a bit of laser done on one of my eyes although the docs say that's good going for someone who's had type 1 since 1982! :P

Do you have A CGM as well?

kpandthesunshineband2 Wed 21-Nov-12 23:40:47

Feathery - we have an insulin:carb ratio ie how many grams of carbohydrate that 1 unit of insulin covers & that varies from meal to meal. Our breakfast ratio gives much more insulin for the same amount of carb than at other times of the day. We carb count all food & bolus for any amount of carbohydrate. Am surprised that you've not been told to inject for lunch -is that a school issue? or maybe you are on a different regime to MDI? Do you also inject Levemir or Lantus to cover the basal for 24 hours?
Think carb counting makes it easier to give a more normal diet as can eat pretty much what want & not worry about eating a set portion. May be worth talking to your team about carb counting. My son would be a nightmare keeping to set portions!
With regard to levels & exercise a pump can make life much easier as can change the background basal level on a temporary basis.
Definitely go on the CWD email list & ask as many questions as you want - there are lots of lovely people on there who will help with any queries you have. You can always sign up & lurk for a bit just to see what goes on there!
Whereabouts in the country are you & which team are you under?

focuson Thu 22-Nov-12 22:59:08

Busy oh pet it is very early days for you - all who have posted gets it but also we remember the initial heart ache. I am an awful member of cwd and don't post much but fantastic group of people. Take care

Featherything Sat 24-Nov-12 10:55:05

Hi Kp. I suppose what we're doing is pretty much the same as carb counting. He does eat pretty much what he wants and how much- when he was first diagnosed I thought I was going to have to limit the amount of food he had, and panicked as my son has hollow legs, ha. But unless we're doing something wrong his eating hasn't really had to change. He just can't eat sugary stuff whenever he wants but I keep reminding him I never really let him anyway!
His insulin is novomix30. 30% of the mixture works initially with the meal, then the other 70% works over the rest of the day, so from breakfast till dinner- about 5pm; then again with his evening meal and then continues to work over the course of the evening and until morning. So, I assume, works the same way as the Levemir, but he only needs the two injections over the course of the day.
I haven't really looked to much indepth at other methods, as it's been enough to get my head round this method! But the pump sounds like something that may work for him in the future. It'd be great if they could invent something that tested sugar and regulated insulin at the same time so he wouldn't have to think too much about it!

I hope your dd is doing ok busybee.

busybee20 Sun 25-Nov-12 00:02:14

Nice to see all the posts here, does make you feel less alone. I am having the week from hell as my ds (toddler)has a chest infection. Endless nights of crying on top of worrying whether dd b.g levels are ok. What do you say to your dc when they ask 'oh why do i have diabetes? ' : (

busybee20 Wed 28-Nov-12 01:18:08

Parents - how do you manage the carb counting if child is invited to a birthday party or when it's the school xmas party?

focuson Wed 28-Nov-12 08:42:42

Hi our ds has just turned 10 - dxd when he was 8. He also has a pump and basic carb counting skills. For parties we either send in a box of carb counted snacks or he prefers to bring a box of carb free and has a empty box to bring treats home. School would support him with carb counting at party but hit and miss and he prefers to have a bit more indepedance at these events hth

BerthaTheBogBurglar Wed 28-Nov-12 09:16:06

Birthday parties - I'm there with him, Carbs&cals app on the phone, guesstimating as he eats, nipping into the kitchen to read packets ... Alternatively you can make a very conservative estimate of what they might eat and give them that up front, and then test and correct whatever level they get to later. All the excitement and activity helps - ds2 needs a lot less insulin per carb than usual at a party.

School party - hasn't happened yet. Think I'd send him in with his own box of stuff with carbs listed. Or offer to help at the party... Or maybe go in earlier and write out a list of carb values of the food on offer?

But sometimes Guessing is the way to go.

Ds2 has a cold this week. He has been rising to the high teens every evening as soon as he goes to sleep and staying there till midnight and then crashing down to a hypo. We need a little [matchsticks propping eyes open] icon.

BerthaTheBogBurglar Wed 28-Nov-12 09:17:11

Focuson - it's good to know how it works as they get older!

Bramblesinafield Wed 28-Nov-12 17:51:01

Hi everyone, my son was dx'd 5 years ago and we endured seven months of injections before he had his pump - changed up lives overnight. We had an awful shock, having believed that all was ok overnight on injections when we had a trial of cgm and also got up randomly to check him - he ws in the twos for hours from 2am the bounced back up. The pump has sorted all that.

We now pay for cgm which is linked to the pump and feel we have great care for him - he does too.

Found Cwd in our early days and what a great group of people. Got a separate gmail account to cope with the amount of mail though! Don't post much now, but recently went to friends for life family diabetes conference and we all felt normal for the weekend!

Off to count carbs with Ds but will look back in.

busybee20 Sun 02-Dec-12 15:20:46

Parents - what do you when out with your child. Do you test b.g at the table in a restaurant or go to the toilet ? So far i have managed to time it so that we're in the car. DD feels conscious when it comes to having her insulin done.

paddyclamp Sun 02-Dec-12 22:53:08

I always do my insulin under the table, same with my bloods ..... i am discreet so if other don't like it then it's too bad...but to be honest i don't think anyone really notices!

Can understand if your DD feels self conscious about it, i used to be the same, and in those days i used to do it in the toilets smile

kpandthesunshineband2 Tue 04-Dec-12 04:04:14

Absolutely test at the table, never in the toilet. Feel it is important that my child isnt embarassed to test anywhere especially as may have to test where they are if hypo. When out with other people again feel it is important that other people& friends are used to him testing.
Same with injections - would never do in toilet as least hygienic place. I would try to be a little discrete about injections in case people are squeamish about injections but don't think people seem to notice if you dont make a big fuss. Have to say this is another great thing about the pump as very easy to bolus when out & about.

BerthaTheBogBurglar Tue 04-Dec-12 16:32:53

We test at the table (and on the bus, and in the queue at the bank, and on the swings when he wouldn't get off, and in the cinema with a torch, and ... !).

Injections depended - if I thought there was no danger of someone pushing past and jogging me mid-jab, I did it at the table. Otherwise we'd find somewhere else like the baby-feeding room.

But ds2 is 4 and has no understanding of "self-conscious" grin. He'll show complete strangers the infusion set in his tummy and give them chapter and verse on how his pancreas broke.

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