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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.

Duritzfan Fri 16-Nov-12 19:53:21

Welcome to the club no one wants to join sad
My dd has had it for 9 years now - have you found the CWD UK mailings and website yet ?
If not - google them
Fab support from other parents who really understand all your feelings

How old is dd and whereabouts in the UK are you ?

busybee20 Fri 16-Nov-12 21:33:21

Thanks, will look up on google. Dd just turned 6, how cruel life can be. how old is your dd? do you find mealtimes really difficult?

servingwench Fri 16-Nov-12 22:20:38

Hi my nephew was diagnosed aged 3, he's now 4. My sister likes this www.facebook.com/#!/JDRFUK on facebook. You may already know.
I know from her what a horrific nightmare diabetes is sad

busybee20 Fri 16-Nov-12 22:54:06

Thank you serv will do that too. How is your nephew now?

paddyclamp Fri 16-Nov-12 23:53:15

Not got a diabetic child - i'm the diabetic! .... Was diagnosed with type 1 when i was at junior school.... sure it gets a bit annoying at times but just wanted to say that it's never stopped me doing anything. I managed to get through school, uni etc unscathed and am now happily married with kids and only very minor eye damage (which i am having lazer for) to show for it!

I can't say i know how you feel cos i don't...but i do know that my diagnosis was far more traumatic for my mum than it was for me!

Anything you want to know, ask away!

kpandthesunshineband2 Sat 17-Nov-12 01:56:45

Sorry to hear of your dd diagnosis. DS was diagnosed Type 1 2 years ago. He is now on an insulin pump which he loves compared to injections.
Agree that cwd email list is a fab place - lots of people on there who will understand what you are going through. It is tough especially in those first few weeks but it does get a bit easier as you get used to everything.

BerthaTheBogBurglar Sat 17-Nov-12 19:23:07

Hello! Ds2 was diagnosed in Feb. He is 4, and has an insulin pump. And I have 'Carbs and Cals' in my head.

How is your dd's school coping?

busybee20 Sat 17-Nov-12 21:58:05

Hello bertha, dd school will be holding meeting with us and diabetic nurse. Unfortunately there are no other children with diabetes in the school so they have no experience. Im very nervous about school and will.probably spend time there the first few days etc. How does your ds cope with lunchtime. Is the school good?

BerthaTheBogBurglar Sun 18-Nov-12 10:46:16

Ds has a 1:1 TA for morning snack & playtime, and for all of lunchtime. He has a packed lunch and I put a note in listing the carbs in each item of food, and the total. The TA does a BG test before he eats and then gives him insulin after he finishes eating.

When he was first dx'd I spent a week in school with him, although he was only doing half-days at the time.

They have a list of times to do a BG test (morning break, lunch, afternoon break, before PE) and a list of symptoms/warning signs of when to do an extra test. Then they have a table of BG levels and what action to take at each level.

The school staff have been pretty nervous, particularly as time went on and they realised that he wasn't going to get better. I mean, they knew the diabetes wouldn't go away but I think they thought his blood sugar would stabilise, we'd get the insulin dose right and he'd basically be ok without too much intervention. After a while they realised it is completely random, every day is a juggling act, and highs/lows are a daily occurrence. That freaked them a bit. They're getting the hang of it though.

gallopygallopy Sun 18-Nov-12 13:57:49

Hi, ds was diagnosed in July aged 12. His secondary school are very well geared up to deal with it - there are 6 in the school who have it. Everyone in the house has Carbs and Cals apps! Still a bit of a struggle though to get those carbs in though.

Any others with teenage diabetics out there?

Gooniechoons Sun 18-Nov-12 14:04:41

I had a diabetic child in my class last year. Pm me if you like, I can't go into detail on here!

busybee20 Sun 18-Nov-12 19:12:15

Thanks Bertha for sharing your info with me. I'm really freaking out to be honest about the thought of leaving dd with school. I didn't realise that insulin could be administered after meal. Have been taught to give before every meal and then make sure eats within 5 mins of administering it. It's a fast acting one called Novorapid - is that the same as your ds? what kind of snacks do you send in with your ds? We have found bananas, cereal bars and digestive biscuits to work ok.
Gallopy - hope your ds is ok, i know how stressful the carb counting is.

Goonie - thanks will pm you.

BerthaTheBogBurglar Sun 18-Nov-12 20:54:15

Ds2 is on Novorapid too. Because he is younger they said do it after the meal, and then its not a disaster if he doesn't eat everything.

He is on a pump now so the snack thing is different - he gets insulin for every carb he eats, but less insulin per carb. Whereas on mdi you're effectively giving slightly more than he needs at the 3 main meals, and that covers a 20g-ish snack in between meals. The snacks are less important on the pump - if he doesn't eat we don't give him insulin. While on mdi, you've already given the insulin so they've got to eat, iyswim.

Leaving them at school is scary! Expect lots of phonecalls. I think I've got all the different possibilities covered and then something else happens. I think the teachers are more scared than I am though. It helps a lot that they have a regular routine at school - our worst hypos always happen at the weekends!

busybee20 Sun 18-Nov-12 23:02:09

Hypos now thats another area im so scared of. Dd target before meals is meant to be between 4-8, but today i noticed when she was at 5, her mood seemed a bit off and rhen as soon as she ate she was fine. I pray that they find a cure for this illness soon.

BerthaTheBogBurglar Mon 19-Nov-12 11:39:15

5 is ok - she might just have been hungry. Non-diabetics regularly go down to to 3.5 without any problems. The reason we treat at 3.9 is to give us some leeway. Brain function starts to be affected at 2.6.

The rate of drop affects how she feels, too. If she drops from 14.0 to 5.5 very fast, she might feel bad even though she isn't actually hypo. But she might go from 4.5 to 3.5 very slowly and not notice a thing.

Hypos are really nerve-wracking to start with, but like anything else, you get used to them.

servingwench Mon 19-Nov-12 20:05:18

Hi, my nephew is doing ok...because my sister and brother in law work damn hard at it! There have been many tears along the way and I would say get as much support as you can and educate as many as your friends and family as you can. My sister has all sorts of "fun" with nursery and preschool and with friends who have insisted on lunch meet ups after early diagnosis which was really hard!
I think nephew and sister and Bil are amazing and are doing a fantastic job....it breaks my heart on a regular basis though sad

ClareMarriott Mon 19-Nov-12 20:12:22

My nephew was diagnosed some years ago when he was about eight. I remember that wholemeal bread and apple juice was around a lot for the times he was undersugared and I remember that he used to keep glucose tables stuffed down his socks

gallopygallopy Mon 19-Nov-12 20:21:57

Ah yes, we have glucose tablets coming out of our ears. They are in the car, in all my handbags and ds's school bags and kit bags and everyone's pockets just in case!

Hi busy bee, and others! Am usually a lurker on mn but stumbled across this thread and had to reply.
My ds was diagnosed about 6 months ago, just before his 6th birthday. It was extremely hard to cope with to begin with, and we still have our ups and downs, but it's definitely getting easier. I found it hard how quick he was back in school- he was back within a week of being diagnosed, and that included 3 nights in hospital!
He's really good recognising when he's low and can do all his bg tests independently, but he hates his insulin injections (can't blame him) and he gets quite grouchy in the morning because of it.
He's on the novo rapid too. I don't have any problems with him eating after- he is a very good eater and always has eaten well and healthily.
I think I need to learn a lot more and be more clued up though- I don't think I know enough!

BerthaTheBogBurglar Mon 19-Nov-12 22:21:19

Book recommendations -

Think like a pancreas is a great book - really readable but helped me to understand a lot of the "why did he go high then?" type questions.

Ragnar Hanas' book is a bit of a tome but does cover everything you need to know in great detail

I wish I could get ds2 to have glucose tablets, or jelly babies or something. I have to carry cartons of apple juice everywhere (can't stuff those in a sock!)

busybee20 Mon 19-Nov-12 22:43:19

Thanks everyone for your posts. And thanks to MN. Feeling very stressed today, DD complaining of sore throat plus has runny nose. Seems fine during day but worse in evening. My toddler also not feeling well and has become all clingy too - just what i need right now. I also feel need to read more and educate myself. Will try and get those books. Oh was also wondering if you all give flu jab to your children and if so are there any side effects.

gallopygallopy Mon 19-Nov-12 23:11:39

Ds has had the flu jab with no side effects other than a sore arm. If he was under the weather though I probably would have waited to do it until he was better.

gallopygallopy Mon 19-Nov-12 23:15:55

Meant to add hope they feel better soon, busy bee.

Thanks for the book recommendations Bertha, will look them up

Thanks for the book recommendations Bertha, will check them out.

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