thread for parents with diabetic children

[busybee20]

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]

Today my DD had her second hypo since diagnosis. It was horrible to see my baby look so weak. She went down to 3.6. I gave her 100ml of ribena. Then waited and gave her a snack which was due. It took about an hour before she was back to her normal self again. As a mother I feel so helpless that I can't do anything about this horrid illness.. :(

[busybee20]

Hi diamond, scary to hear about doctors misdiagnosing your DD. I guess that's one thing I will be grateful for to my G.P. If it wasn't for his prompt decision to send us to A+E, hate to think what would have happened.
At the moment DD b.g levels are all over the place. One minute it's high the next it'e border line hypo.

[DiamondDoris]

My DD is 9 and type 1 diabetic - she developed it when she was 4 after developing severe ketoacidosis which the doctors kept misdiagnosing! She's doing very well on multiple injections: novo rapid and levemir. Currently a TA is doing her lunchtime injection. Like others I make a packed lunch for her with a post-it-note with the carbs written on. Try to make life simpler by repeating meals where possible - she eats the same packed lunch everyday for a week and then it changes to something else the following week. I hate anything that doesn't have the carb amount on it and have to spend time googling, weighing and calculating. I still get very emotional about her condition and hope that there will be a cure one day (soon). Most diabetics (type 1) grow up to be diet conscious individuals and generally do better than type 2s. When she's older I'm going to encourage her to eat low carb.

[omghelpmeplease]

www.diabetes.co.uk/diabetes-forum/
this is a good forum by the way

[omghelpmeplease]

11 meaning age 11 years btw

[omghelpmeplease]

i have a 18 year old diagnosed at 15 months and a 15 year old diagnosed at 11
love to talk more
i will be back
sleep beckoning
i need support
please someone pm me regards teenage non compliance

[busybee20]

Tidy - so sorry that your son developed diabetes at such a young age, i too have a toddler and can imagine how hard it must have been for you. It's wonderful to read that your son aand all the other children that are mentioned here, are doing well in their education etc. Gives me hope as DD was doing so well at school and I don't want anything to hold her back. Yes you are right I need to find some local parents, MN is great but I think its important for DD to meet others likeherself. She's already asked "mummy why am I the only child in my school with Diabetes?"

[Tidypidy]

My son was diagnosed aged 13 months. He's had a pump from the start which 3 years on is part of who he is. The diagnosis us overwhelming but it quickly becomes second nature to test, count carbs and give a bolus or injection. Supposition family members is important as is contact with other families whose type 1 children are the same age as yours. Your specialist nurse should be able to put you in contact with other families. Try to stay positive as it's easy to get depressed by it all. One of the worst things people say to me is it's " such a shame he's diabetic". It's not what anyone would choose for their child but you just have to get on with it. My son is now at preschool and thriving. Diabetes will not hold him back.

[BerthaTheBogBurglar]

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" . He'll show complete strangers the infusion set in his tummy and give them chapter and verse on how his pancreas broke.

[kpandthesunshineband2]

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.

[paddyclamp]

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 :)

[busybee20]

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.

[Bramblesinafield]

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.

[BerthaTheBogBurglar]

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

[BerthaTheBogBurglar]

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.

[focuson]

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

[busybee20]

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

[busybee20]

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? ' : (

[Featherything]

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.

[focuson]

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

[kpandthesunshineband2]

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?

[paddyclamp]

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?

[Onlyhappywhenitsnows]

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]

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]

Hi
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.