Diabetes - DS has just been diagnosed ...

[Millie1]

Am hoping that parents of diabetic children will be able to give me lots of advice and words of wisdom on how to move forward. DS was diagnosed last week and is still in hospital being stablised - DH with him tonight - we're hoping he'll get home tomorrow. Still trying to get our heads around it and get used to the idea. It will mean some changes to our diet and the way we do things but nothing too radical, I hope. Healthier! I'd love advice about altering recipes, suggestions for snacks (after 5 days in hospital he won't even look at a digestive biscuit or toast!) and just any hints/tips I may find useful.

Thanks!

Yes - we get the middle rate.

How are you doing this week?

DS is doing well but a bit lippy!

He is cheating a bit but it is reflected in his recordings. He wanted quite a bit for supper tonight which is fine but I had to badger him to cover it with novorapid.

He likes the Accucheck lancet but prefers the glucometer which is a different make. Do you know if you can mix and match? Could I get a prescription for accucheck lancets?

Oh I hate that word "cheating"!

You can mix and match, but you may have to get documenation from your son's d team to his gp confirming his prescription items. I personally reuse my lancets till they're practically blunt, and only have on my script list humalog and test strips (the lancets I use from new meters in particular Lifescan keep on sending me!). Oh and backup Lantus for when my pump breaks....thankfully not very often!

Hope he's doing ok...

Hows everyone coping this week? This really is a steep learning curve!Son been doing well for few days so as mothers day treat had take away indian, we still seem to be paying the price, sons levels are all over the place, just can't seen to see a pattern, we getting high spikes seemingly for no reason all over the place!Is this common occurance? Also found that if son had 'supper'have to be really careful with amount of novorapid we give as seems to be having night time hypo's (having high reading and feeling crap in the morning)_Finding it hard to balance huge teenage appitite that wants to graze all evening with injections! Any advive on this would be appreciated.

Just had a go at DLA forn, its a nightmare. My son also has a level of dyspraxia so is not the most organised person, it is so hard to quantify time spent supporting him!

Hello everyone.
O.k to join as a late joiner ?
Oblomov here.

Hello to Spidermama again.
I was on a thread with her and Lillypink this time last year, just as Spidermama's ds was diagnosed.

A year later Spidermama (what a diffrence a year makes) - how are things ?

Nice to meet you all - have really enjoyed reading the thread.

How are you all doing ?

Hello particularly to mm22bys - I too am on a pump with Prof at Kings.

Hello Oblamov.

mm2bys - I understand what you mean about the word 'cheating' but I don't know how else to describe it.

If he going to have chocolate he has been adviswed to have it after a meal and cover it with extra insulin.

He was popping maltesers in indescriminitely the other day (I was given them by DS2 for mothers day), hoping I think that he would get away with it.

Sugar level rose which obviously lets him learn what will happen if he does that. I don't want to nag him but equally I don't want him eating things that he knows he should have more insulin/exercise for.

It has only been 3 weeks though and he really is a little star.....

hi im feeling ver stressed head up bum etc daughter who is 3 has got a cold full of it and a annoyin cough at night
so not eating etc not been here before any tips

Hi Debbie ... when DS was ill a few weeks back we checked blood sugars much more regularly than normal and every two hours throughout the night. Ketones too although obviously not if there weren't any present and if they were present but low we checked them maybe 2/3 times a day.

As far as food was concerened, the usual routine went out the window cos he wouldn't eat a thing. So he got ordinary (ie. full-sugar) fruit juices, nibbled biscuits, crisps, dry cereal, bread - anything, even bits of chocolate at times. Whether you need to go to this extreme depends on how low your DD's blood sugars are. DS would have been permanently hypo without all the sweet/sugary food and even that only kept him hovering around four (and often below) for a few days til his appetite picked up. If your DS's sugars are higher, then I'd think that milk would be good for carbs, icecream, what about some weetabix, readybreak to pick at? Anything that will give her some carbs to counteract the insulin.

Have you spoken to your Diabetes Nurse to get their advice. Oh, the other thing we needed to do was reduce his insulin but the hospital and DSN advised us what to give him depending on what his levels had been like over the previous 12/24 hours.

Hope this helps a little.

Hi Koonelly,

Are you thinking that your ds has been having night time hypos and waking up high because of a rebound? There's also something called the dawn phenomnon where BGs rise towards the morning - to do with growth hormone being released, and more marked in puberty. So high BGs in the morning could also be related to that. The only way to tell is to test for a few nights at 2 or 3 am and see if you can catch a hypo. Ask at clinic if they have a CGMS - a monitor you wear for 3-5 days that measures BGs every few minutes and will give you a good idea of any patterns (my ds recently had one and it showed a real spike after breakfast so we have put up the breakfast dose - as his BGs were pretty much Ok 2-3 hours after breakfast we had no idea about the spike).

We were told at clinic last week not to inject/give insulin bouses through the pump less than 2 hours apart. So if your son is grazing and injecting throughout the evening he will be getting a build up of insulin causing the hypos.

HTH

Hi Tangerine,

Yup, was suggested that morning highs were rebound, have done a couple of 3am readings, totally confused me as was 13.2 at 3am this morning but had had bad day yesterday i think cos of takeaway was hyper all day. Got a little better today highest been 10.7 and was 5.4 before bed which is the lowest we've ever managed! Was thinking of giving him break tonight as both knackered, but not sure now? Also we were told to leave at least 4 hours between injections , which is why we have this evening problem, we eat at about 5.30-6pm as family and have trying to fob him off all evening with low carb snacks, so ends up eating sandwich or something at 9.30-10 injecting then going to bed, which is why we having problems.Son in first year of GCSE and keeps waking up hyper feeling awful and missing morning at school! But like you mears its only been 3 weeks and we have come a long way i suppose!

Diabetes nurse team has been away on conference or something last week, said would contact us when back. Will definately ask about CMGS though when we hear from her, would they concider it this early after diagnosis?

Also sorry... Hi Oblomov!

Hi Koonelly,

It could also be not enough levemir to get him through the night. He should ideally be on about 50/50 basal/bolus (e.g. my ds is on 12.4 units basal via the pump and on a good day when we don't need to correct any high readings about 12-14 units with food). But please get advice from your team rather than take my word for it. I think there has been a big diabetes conference up in Scotland this week.

I don't think it should matter how long you have been diagnosed to have a go on a CGMS. Your ds is regularly waking up hyper, feeling awful and missing school. You need to find out what is going on in the night so you can address it by changing the timing/amount of his insulin.

and hello Oblomov!

Also, does he have his levemir in the morning or at night? Some people report that it only lasts about 20 hours, so if he's having it in the morning with breakfast it might be running out by the early hours of the following morning, when his BGs are naturally rising anyway.

Just wanted to give my experience on how close you can give boluses.

If you are just giving boluses to cover food, it really is best to give the boluses as you eat. If you eat and don't cover them you will go high!

If you are giving boluses to bring down a high, yes you should wait at least two hours, as it can take that long to reach its maximum effect so if you inject too often you can go hypo.

Hello to Oblomov, "nice" to se you here!

hi Koonelly my daughter is excatly the same durin night will go to bed about 8-10mml then at about 10ish at night ill test her and she can be anythin over 22never been below not sure why but by 8 next monrin she is bk down to 6-8 she doesnt sllep durin teh night can be very fidgety and drink lots
ive tried this week to get intouch with her nurse as she full of cold so not eatin weel and well im still waitin for replies for them to get bk ive left messages on answer machines etc waste of time i feel we been thrown in deep end as she was only diagnoised nov

Hi mm2bys,

That's what I thought - we bolus as we go along even if it's a bit of a unit at a time. Ds has tea at 5 ish and supper about 7-7.30 so I was bolusing for both but on the CGMS there were some late evening hypos which seemed directly related to bolusing too often. They advised not to bous less than 2 hours apart, which means spreading his evening food out a bit. Do you use the bous wizard/insulin on board feature on your pump? We have been offered one of the new sensor pumps to play with over the Easter holidays and I can't wait to have a go.

Hi Debbie,

Sorry to hear your lo is still not well and that your DSN has still not got back to you. Keep at her!

Hi Tangerine,

I have an older pump with a bolus wizard and insulin on board function, but I don't use it as it is preset with an IOB duration of around 6 hours (it may even be 8 hours) which on my pump you can't change. I think my active-insulin duration is only around 3 hours so the IOB function is actually pretty useless!

The newer pumps do have an adjustable IOB duration though.

There are various tables around on the internet that give IOB at different times. If anyone is interested I can try to dig one out....

I will be due for a new pump in August next year (after 4 years) so hopefully I'll be able to get a "smarter" pump then.

Lucky you getting a sensor pump even if it's just to play with. I want one too!

Tangarine I've been thinking some more about this and the only explanation I can come up for your DS's hypos are not on the frequency of the boluses, but on his insulin : carb ratio, and the amount of the carbs he is eating.

Are you absolutely certain that you've got this right?

It is a basic prinicple of MDI that you can bolus as you eat, and very often this will be within two hours of last eating....

I have never been told not to bolus within two hours (unless it's to correct a high...)

All best,

Hi mm2bbys,

What you say makes sense. The insulin/carb ratios change quite often so I may just have to spend some time over the Easter hols re-calculating...over the last year we have gone from 1:10 to 1:8 to 1:7 for breakfast. 1:15 for snacks and other meals usually works, but in the afternoon 1:18 might be better (but the maths is harder ) as it's also after his games lessons at school. So much to think about...

Is your current pump from meditronic? Apparently they are only going to make sensor pumps from now on (and are dropping the price towards that of an ordinary pump) so the only significant additional cost is for the sensors/software. Might be worth thinking about for when you upgrade - you don't have to use the sensors all the time (though it would be tempting...). Ds's hospital wants to do some research putting patients on sensor pumps for 6 months, then putting them back to normal one and seeing whether control is any different. Gut instinct says it ought to be, but there isn't enough research on children to prove it. Fingers crossed we will be included.

Oh and ds's IOB is 5 hours rather than your 3, so when I do bolus wizard there is often quite a bit left from the previous bolus which I don't usually subtract. Maybe I should take more notice of it!

Hi Tangarine

I do have a Medtronic, a 712. It is better than my last pump, a 508, but things have improved in the 2.5 years since I got it.

A sensor pump would have been GREAT during pregnancy.....maybe next time ;-).

Hope you're included in any trials from your hospital!

Thanks mm2bys. I was just looking again at mears' thread and saw you said you knew someone on the parents' email group with a 12 year old. I'm trying to work out who it might be now, as I post a lot in that group as well (presuming it's the same one).

Hi Tangarine,

The dd with diabetes also has a twin, but she doesn't have D...

Won't say anymore, feel a bit uncomfortable discussing somebody else publicly, but feel free to email me!

Just back from diabetic nurse clinic. DS only needs to check his glucose levels twice a day for now. Each day is to be alternate times so that over 2 days you have a picture of all mealtimes and prebed.

We still do not have to count carbs yet. There will be a workshop soon that he can attend to help him manage special times like carryout meals etc. It will make it easier to calculate extra insulin.

Funnily enough we had his first 'proper' hypo after we left the clinic. Once we were in the car he fely strange and then very shaky. His blood glucose was 2.9. He had some dextrosol sweets and I nipped back up to the hospital for some hobnob biscuits then he was fine.

BTW - the nurse said he is not entitled to DLA as diabetes is not a disability. He is normal.