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!

Hi Paddyclamp and Millie,

Have you heard of DAFNE (Dose Adjustment For Normal Eating)? It's a program for those on MDI where you learn to carb count, work out your insulin sensitivity factor to lower highs, cover exercise, sick days and even alcohol. I did the course through Kings back in '03 and it was great meeting others with DM and for the first time I felt I had the medical endorsement to use the tools at hand to eat "normally" without feeling guilty. I don't deprive myself of the goodies - if I know how many carbs are in say a piece of cake I dont see how that is different to eating the same no. of carbs in say a sandwich. I am not saying eat like this all the time, but then again I don't think non DMers should eat cake every day either!

I was 18 when I was dxed. While I think I was lucky to not have had it at school, it was a bit of an adjustment, but I just got on with it - you do what you have to do to kepp yourself alive and away from the paramedics / hospitals / doctors!

I just put the pump on the bed next to me, it doesn't keep me awake. Sometimes I roll on top of it, or it ends up on the floor, and it has been dropped more than once, but they are pretty resilient things...

Spidermama has pointed me in the direction of this thread.

We were at the clinic with 16yrs old DS3 who was diagnosed on Thurday night last week. We spoke to the dietician and the diabetic nurse who were fantastic with us.

I had been shopping looking at all the sugar content of sauces etc. They said not to bother doing that. All he has to do is eat a low fat healthy diet. They are happy that his drinks have been changed to diet ones and that he is taking brown bread and semi-skimmed milk. His sugars toady are between 11 and 13.7. Again they are happy for the reasons mentioned earlier on in the thread that it is best to avoid hypos initially until he gets used to the regime. His doses have been upped today at teatime and night time. When we go back on Friday we will get a chart which will help us alter insulin doses according to carb intake.

He is on Levemir at night and novorapid throughout the day. Interestingly they told us that the hospital dietician had given us incorrect information about a snack before bed. He doesn't need to eat one. If it is the case he wants one then he should be taking novorapid then as well. They said that it is not that long ago that the insulins changed and some hospital dieticians are still doing what needed to be done with the old insulins.

A tip I was given by a friend who has a daughter with diabetis for the past 16 years is that children are probably better to have the Novorapid immediatetly after a meal. That was you are not stressing if they don't eat the whole meal. Same as eating out - inject after the meal then you don't need to worry about waiter serving too slowly. This is in relation to the short acting insulins. They can be taken up to 15 minutes after eating a meal. We haven't needed to do that yet but it sounded a good tip.

We are lucky that we live right next door to the school so DS comes home for lunch. He is getting on really well with his injections now. I cannot imagine what it is like having to cope with toddlers and young children. It is bad enough getting your head round a 16 year old.

I live very close to school too. It makes me feel much more comfortable about the whole thing.

Interesting that your ds is on levemir already. I wonder why mine is still on mixtard. Perhaps because he's younger. I need to ask some more questions. At the moment I'm just feeding the insulin which means three meals and three snacks a day.

Hmm.

Hi All

Paddy - no, we didn't get a unit/carb ratio. MM2 - thanks for explaining the Novarapid dosage & administration. We nearly had to use it tonight. He has been creeping up so before dinner was 15.1 or so. Poor dinner (again - picky eater!) and 2 hrs later was 19.8. Had phoned Registrar before dinner and we agreed to leave evening dose as is and increase morning dose as it's obviously not high enough. DS then fell asleep between dinner & supper so when we checked him and he was so high, I spoke to Reg again who said to give Novarapid if he would eat supper, otherwise let him be and the long-acting would kick in at 10pm. He didn't eat/drink. Anyway, checked him at 10pm and he was back down to 15.8 so heading in the right direction.

MM2- I have read of DAFNE on the internet back when DS was diagnosed. Would be really interested in this and will make a note to do some investigations and see if there would be a programme run locally to me.

Mears - welcome to this thread! Your DS seems to be coping really well. Re injections - your tip is a good one and something we're doing as injections were upsetting DS so much before meals that he wouldn't eat then we were pretty much chasing him round the house with food, begging him to take something. His nurse suggested injecting him directly after meals and it's working out much better. Bar his 'I don't like that' chorus.

Spider - I wonder whether the different forms of insulin are linked to age. There was another child close by diagnosed recently and I think she's on Levemir and Novarapid but she's 15.

Yawn - must go to bed.

Poor DS has been crippled by a sore stomach the excessive poo tonight! He tried diet sweeties yesraeday and today - not a good idea. We were warned they can cause diarrhoea.

His BS at teatime was 17.3 but is now 16.3 for bedtime. That is the lowest since he came out of hospital. Will be interested in morning one as he has dome without the snack.

There is more information about the insulins he is on at www.novonordisk.co.uk

Not sure if it mentions age restrictions or not. Perhaps it is to do with ability to co-operate?

He was given the choice as to whic =h regime he wanted to follow in hospital. He chose basal-bolus therapy because it meant he could have a long lie if he wanted! Typical teenager

Mears I'm trying to persuade ds's carers to let us do the basal bolus. The big drawback is it would require him to do an injection at school and he's not keen. It means though that he frequently has morning hypos and is hyper by mid afternoon when the mixed insulin has run out. It's very unsatisfactory. I think your ds is doing well to be on basal bolus straight away.

Ah those blinkin diabetic sweets...remember them well, they're like laxatives!

He seems to be coping very well. His BS this morning was 7 and it was 7.7 yesterday morning. Lunchtime yesrerday was 8.4 then teatime it was 18. When he first checked it, it was 32 but he hadn't washed his hands he confessed. Lesson learned. It was 16 going to bed. So it is getting there but not quite.

My sister works for the drug company Pfizer who have developed a nasal insulin and have been granted a licence. NICE would approve it for use because there is no cost benefit. I am confident treatments will change in the future though. I wonder if anyone on the NICE committee injects 4 times a day?

Mears I heard that there were other problems with the inhaled insulin products which are being developed. Something to do with putting a strain on the heart ifrc.

I'm really glad your ds's blood sugars are down. What a relief for you all. Great readings. I find, even though it's subconcious sometimes, my mood is dependent on ds's last reading.

Must ask her about that.

He's just in for lunch and has told me he had 3 Roses chocolates in second period. I think he fely he could because his sugar was 7 before breakfast. This will be interesting!

Bloos sugar is 14.7. Another lesson learnt - I think he thought he could get away with it. Hopefully his little experiment so early on isn't going to depress him too much

hi Mears,

I have heard of problems with the inhaled insulin too. Personally, my view is, cure the thing! We really don't need more ways to get insulin into us!

That's just my opinion though, I don't have to inject a small child several times a day!

Lesson re the chocolates? He probably just should have bolussed to cover the carbs!

All the best,

We're going to learn about that on Friday mm2bys

We haven't got the confidence to skiddle around yet. It's like he was hungry last night and fancies womething to eat. He had a yogurt and that was fine but should he just have some Novorapid and eat some supper? We haven't learnt how much insulin per carb IYSWIM yet.

I went on novorapid (or actrapid as it was called then) when i was about 12. Really don't think it's an age thing, i'm guessing it's to cut down the number of shots for younger kids.

I often take novorapid after meals rather than before, esp when eating out.

From what i remember the docs were keen for me to get on basal bolus asap. But maybe they were waiting for me to get to the point where i was pretty much totally in control rather than my mum

I'm just gearing up to do battle with my PSDN in order to get ds on Mixed Dose Insuling. At the moment his Hba1c is 8.9 which they say they're happy with. Well I'm not and according to NICE guildlines nor should I be.

I feel I'm doing everything possible with diet etc. We've just had DS on a Continuous Glucose Monitoring System and there are unaccpetable 'spikes' in his readings.

Mears I wonder why your ds went straight on to levemir and Novorapid. Did they offer you a choice or is this the standard. My specialists say ds is too young (7) but I know of lots of younger kids who are on it (some under 2!!)

My main thrust now is to try to stablisie ds's moods mainly for his sake but also for all our sakes. He's a different boys since diagnosis and I've been inspired to hear lately stories of how people felt the 'got their children back' when they went on to the correct insulin regime for that child.

Spidermama - they offered him the choice before I even got up to the hospital, so it was his decision. He wanted the flexilibility of a long lie in the morning!

We are going to see Daibetic Nurse today after school.

Hi all,

my dh is type 1 diabetic, just wanted to let mears know that he has an extra bolus of novorapid if he eats something high in sugar to counteract its effects. He is a fan of Roses too!

He was 10 when dx'd and is 38 now. His diabetes hasn't interfered with his life much at all on a day to day basis. He does find that if he gets a bug it hits him hard, an example being he ended up in hospital being stabilised when that winter stomach flu went round a couple of years ago. But on the whole the basal/bolus regime means that he doesn't have to time his meals and he eats pretty much whatever he wants, and just tailors his insulin to match. Much easier to cope with than when he was first dx'd and the regimes were very rigid.

Thanks cheesyfeet.

The diabetic nurse was great again today. We have a sheet advising how to adjust the insuling doses etc. He is going to his games night tonighht and she has said he can have a treat if he runs it off. The games night involves warhammer models so is pretty sedate, however they run around with the youngsters afterwards. DS it pretty interested in doing extra glucose checks to see what happens after exercise or eating the wrong thing. I am glad that he is the age he is to discuss it all. It must be so hard with young ones.

Spidermama - I asked her about whether there was a certain age group for novorapid but she said there isn't. It depends whether younger children will tolerate increased injections. The plus side for youngsters is that you can give the novorapid after a meal so you can adjust the insulin according to what the child eats - as we know they can be picky. Some young children learn to put pressure on parents by only eating certain things and also that they will get sweet things to put their sugar up if they are in danger of hypo. Don't know if that applies at your end.

I saw on the noticeboard in the clinic by the way that a trial is underway with inhaled insulins but you need to be over 18 to participate.

The nurse said that it is hoped that there will be funding for the pump soon in our area. Apparently the Scottish Executive are putting pressure on health boards to have a pump service.

Your son seems to be doing great Mears - you must be very proud of him.

Spider - are you talking about insulin where you mix it yourself? Our diabetes nurse suggested it a few weeks back and I'm beginning to think we might need to go there but TBH I'm reluctant - not only does the pen seem quick and easy but I think DS would freak at the sight of a needle. Your DS is much further down the line though so it might be the answer and you should certainly ask about it.

Our blood sugars are all over the place - he's getting up on around 4.6-4.9, has his 3.5 units & won't eat enough breakfast to cover so nursery have been dealing with hypos this week (2.7-3.0 by 10.30) then he runs high the rest of the day except for one day when he would not eat dinner or supper and we had to wake him at midnight to give him a biscuit. Don't quite know what's going on - the afternoon highs could be due to the increased sugars from morning hypos or else that his am dose isn't high enough so the long acting is wearing off too early. will watch him carefully this weekend and see what happens in the next day or two.

Millie no not insulin you mix yourself, but a regime which involves giving a basal (small, long lasting insulin) to cover the day and another at night, then a bolus injection (faster acting) to cover each individual meal and an extra snacks. It involves knowing fairly precisely how much insulin is needed for each meal and you have to weigh things at first, but it means you're behaving a bit more like your pancreas would by producing insulin to deal with the food rather than injecting insulin then feeding it.

I wouldn't want to knock mixed insulin though if it works for you. My DS's HC1AC was 8.9 at last count, and for me that's not good enough.

Mears my DSN attempted to put us off, but not with huge pressure. She still said she'd support us if we wanted to do MDI and it makes good sense to me. I'm keen to get it up and running.

People seem to love their pumps. Most kids in the US are on pumps but they're expensive. I'm not sure about being attached to something 24/7 but I guess you'd get used to it. I think it's the way forward and it can only be a matter of time.

Millie I'm sorry you're having all these odd readings. It's baffling trying to work out where they come from isn't it? Sometimes it's so hard.

I did learn the other day though that blood sugars continue to drop many hours after physical exercise. My ds wore the continuous blood glucose monitor for three days and nights to get an accurate picture of what his blood was doing and we found he had a long nighttime hype after a long afternoon cycle. It was 3.8 for hours so borderline and not enough to wake him and cause him a problem, but still!

Thanks Spidermama. Didn't realise you were talking about the basal bolus system - think it sounds great but I know my little one is much too young to handle it at the moment and would need to be a helluva lot more tolerant of injections than he is now. If it works for your young man, go for it.

Thanks for the tip re blood sugars & exercise - it's good to know things like that!

Spidermama - we aren't weighing any food at all.

What we have been advised to do is see what the pattern is over 2-3 days. If his pre-lunch glucose is high then you increase the breakfast insulin by 2 units of novorapid. If teatime is high then increase luch time does. Wait for 2 or 3 days and see what happens. If satill high then increase by another 2 units. If glucose level is low then decrease by 2 units immediately. His luchtime and teatime were increased yesterday so we will watch what happens. DS needs to up his exercise as he is pretty inactive being a computer fiend.

Doesn't that presume though that your DC is eating the same for each meal each day? What if he wants to eat a different meal, or a meal with no / low carbs - he would need less insulin, and you would need to know the insulin : carb ratio to adjust appropriately (sorry if you know that already!). I don't see how you can get away from not weighing (at least initially anyway) until you know how much carbs he's eating.

Another thing to consider is how long his meal-time insulin is lasting - I would have thought that by the time of lunch the breakfast novorapid should have run out, so if he is high or low it's actually his background insulin that needs adjusting....

If he does increse his activity level he is probably going to need to reduce his insulin...(sorry if you know that already too!)

All the best, and sorry again if you know already the above...

Hi, just wanted to join in this thread(hope you all don't mind) My DS3 aged 14, be 15 in 3 weeks was also diagnosed on thursday last week! Just logged on so going to back track through this thread to try to get a grip on things!