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 Koonelly,

sorry you have to be here! There's lots of people here with children with diabetes, and there's also a few of us "oldtimers" who, while we don't have kids ourselves with diabetes, can offer our knowledge and experience.

All the best on your road ahead,

Mears,

wanted to qualify what I said ealier about which insulin to adjust - how insulin works in each of us is different, and the effect of the novorapid on your son may last longer or shorter than the 4.5 hours that some studies have shown is the average duration.

Don't disregard what your DS's team told you on my advice. I have been on a pump for nearly 4 years so if I was high before lunch I would presume that my basal was wrong, and not my breakfast insulin (presuming my carb counting was correct, and given that the humalog I use has its maximum effect two hours after injecting).

Maybe some testing two hours after a meal would give some useful information - if your DS is outside his target range then he would probably need to adjust his meal insulin.

All the best,

mm2bys - I certainly see where you are coming from because I am a bit confused myself over this. I don't know whether it is that we are being broken in gently and will get more information each time we go. He certainly has been told that he must have carbs at each meal but not in realtion to quatity. His glucose was 6.7 this morning before breakfast. It was 9.7 before oging to bed. At luchtime it was just over 13 but he had readybrek this morning with banana and a small amount of jam which the diteician said was OK as long as it wasn't too much. He probably should drop the jam altogether but it is his favourite breakfast!

Hi koonelly - how spooky that we are entering this at the same time. How are you getting on?

Hi mears, yup thats what i thought, Though still haven't managed to read whole thread, (can't ever get near pc). I'm still really confused. After inital diagnosis, didn't see dietician for a week, just given loads of leaflets. It all seemed fine in theory but in practice you come over all sorts of dialemas to confuse you! Still haven't managed to get ds suger levels within range, still coming in high, but told to just keep uping units of insulin! Is a bit scary when its all new to you! Was given leaflet on carb counting but not sure yet about relationship of carbs and insulin amounts, think it will just be something we have to learn through experience. Must also admit cos of son's age am finding having to step back and let him control things quite difficult!

Hi Koonelly,
I'm sorry you and your ds are going through this. I hope you're getting decent blood readings now.

Mears your ds's readings sound great. I find that my ds's blood sugar goes really high after bananas

He is having a real problem saying injections are painful - very stingy. He rotates where he is injecting round his stomach. He tried his leg yesterday (I think he was having a stab around to be honest) and it was sore there too. Koonelly - I know what you mean about standing back. He won't let me see what he is doing when he is injecting. I'll need to check it out though.

Hi Mears, I'm on a pump now but remember the injections well! Couple of suggestions...he might find either a shorter or suprisingly a longer needle may be less painful.
Tell him to make sure he kind of gets a bit of a roll of skin to inject, I found digging my fingernail in a bit away from where I was injecting helped to distract a bit. I found doing it quickly helped, but sometimes it did just hurt. I think the more tense I was about it the more it hurt. Perhaps suggest he lets the diabetes nurse watch him do one to check technique. I found it did get easier over time, I would say once I got the hang of it maybe 90% of injections were pretty much painless. For me I think getting used to the idea I had to do the injections was the key to them getting easier...and that will take time. wishing you both luck

oh and one other suggestion - is he injecting insulin cold direct from fridge? a lot of people find this stings more.

Thanks Dilbertina - the insulin is room temperature. He says the lunchtime one was KK. I have asked him to let me watch him do his teatime one - he isn't keen but has agreed. Lowest BS at lunchtime so far - 3.9. He felt OK with it and treated himself to 2 hobnob biscuits after lunch.

Mears I heard that levemir is a bit stingy. I think lantus is supposed to be less so. Perhaps it would be worth your while asking about this. My ds always says injections sting afterwards. I think the stuff which is in the insulin to keep it from going off must be stingy. It smells so strongly anyway.

Well as I thought he wouldn't let me watch. He saya he has changed his technique by doing a 'sawing' action which helps. The mind boggles!

Interesting about Levemir. The novorapid is stinging too.

The size of needle and actual dosage given at any one time can effect the "stingingness", so maybe try smaller needles and/or fewer units (yes would mean more injectins unfortunately)

Hi, just wondered whether any of you old hands can answer this one, my son whos rising 15 and 6ft 2 is finding that he is needind extra dose of novorapid at about 10pm as he usually has a 'supper'then that is usually toast or sandwich, so contains carbs. just a bit worried as told this ok occassionally as if eats needs the novorapid but he wants something everynight. He has large evening meal and then snacks with healthy options durung the evening but he is underweight as lost quite a bit before diagnosis plus, well is teenage boy! Worried cos this means he is on 4 injections of novrapid plus the levimir, is this ok on everyday basis?

koonelly - I was told DS would need to have extra novorapid if eating supper. Don't think that is a problems.

DS1 is 20 today do DS3 is going to have some birthday cake which will need extra novorapid. He is looking forard to it

So ok to have extra injection? as well as adding extra for treat? Just we still running quite high with sugar levels, lowest 8.6 so far, think willring nurse to see ok if we up all round. Just bit scared as haven't expierinced a 'hypo' yet and only just managed to get son back to school yesterday as unsure of it all. He was diagnosed 2 days before my wedding and only let out of hospital night before so was all a bit of a blur and not sure we took it all in!

It's def ok to take extra insulin to cover extra snack, even if it is every day.

Under old regimes, your DS would have been having a pre-bed snack anyway.

He is a big boy, and probably still growing so he will probably have a big appetite and need some food to keep him going overnight!

koonelly - we have been back to see the diebetis specialist nurse twice since diagnosis and she phoned the day after we got home. We see her again on Friday. She gave us her mobile number to contact which I have done once so far.

DS's sugars in the morning and lunchtime are good but teatime and evening are still high - more so teatime because he is hungry coming in from school and snacking. We'll get it cracked in the end though.

Thanks mears and mm2bys. Have only been back once since diagnosis but seeing nurse after school friday, have got mobile number, called and checked it was ok re the supper thing, she did advise trying to move supper a little earlier as having novorapid so late may get night hypo, going to try it tonight. It's really hard to get the balance right as ds has long school day as travels on train, leaves home at 7.30am and not home till 5pm then used to seem to eat non-stop from arriving home, he finding it difficult not just being able to graze all evening!

Koonelly it's fine him having extra shots. It's good in fact. It more closely mimics the pancreas (ie producing insulin to deal with the food rather than eating food to feed the insulin).

I'm so sorry he was dxed just before your wedding. What extraordinary timing! You're probably still in a bit of a haze with so much going on.

My ds was dxed on December 22nd 2005, after an exciting built up to Christmas. We had a crash course in diabetes and insulin regimes and just got him home on Christmas eve. His brother and sister slept with him that night on matresses on the floor. It was a tough time and I'll never forget it.

I hope koonelly and mears that you're coping well. You certainly sound like you are but I know you'll be gathering knowlege at a rate of knotts.

Koonelly I feared night time hypos for ages but actually, over a year now since diagnosis and he's never had one. Different bodies react differently. Some people release glucose from their liver stores during the night which is why they can sometimes go to bed with a decent reading then wake up high. It's quite complex and has to do with other factors, like when their hormone cortisone peaks (different people peak at different times.)

We've just had a Continuous Glucose Monitoring System fitted to my ds for 3 days and nights. It involves injecting in a small sensor under the skin and wearing this meter which takes thousands of readings. Meanwhile you write down all the food and timings, then you can pour over the data.

It might be a bit early to be suggesting this to you as their insuline regime won't have settled down yet.

DS was delighted yestarday - bedtime glusoce was 9.8 and it was 8.0 this morning. Hope he doesn't think he can eat chocolate cake every day!

Going to see what teatime reading is today - if still high going to increase lunchtime novorapid to 8 tomorrow.

Koonelly - DS is the same after school - really hungry looking for stuff to eat. He has fruit, then low fat yogurt then rich tea biscuit(s).

Still waiting for the first hypo!

Evening everyone,

This thread has grown!

I composed a really long post a couple of hours ago but when I tried to post it the site was down...maybe it was too long.

Welcome mears and koonelly and mm22bys. My ds has had T1 for almost 5 years, diagnosed aged 5 and having tried several different insulin regimes is now on a pump. Like mm22bys Kings is our local hospital, but as they weren't interested in pumping for children we changed to another hospital which did about 18 months ago and have not looked back.

Mears and koonelly your boys sound like they (and you) are coping so well. It's good you have started on MDI and regular tests, as that has been shown to improve long term control and prospects.

Re after school snacks - I try to keep low carb stuff in the house like pepperami, ham, pistachio nuts, almonds, cheese and eggs. The fat in things like cheese can cause the BGs to rise a few hours later, but you don't get a big spike like you do after biscuits, some fruit etc. BTW, don't bother with diet/diabetic sweets, just be sensible with amounts and give insulin to cover (this is where the pump is very handy .

Re injections: my DS did say they hurt less if you jabbed them in quickly as opposed to the way we were taught in hospital. As SM said, cold insulin stings more, and lantus is also supposed to sting (though my DS said it didn't)

Re carb counting - I weigh lots of stuff - especially bowls of cereal, as it's easy to over estimate how much is going in. Most consultants have a rule of thumb that 1 unit of insulin covers 15g carb on basal/bolus. You are supposed to check BG 2 hours after meals to check if the amount worked (assuming you are in range before the meal). This is a good starting point, but does not work for everyone, e.g. my DS has 1 unit for 8g at breakfast, 1 to 18 at lunch and 1 to 15 for snacks, tea and supper. Strictly speaking he doesn't need supper, but was in the habit and didn't want to stop. 1 unit will lower his BG by 4.5-5 mmols if he's over 10, but by only 3 ish if he's over 15.

Re injecting after meals - this is OK, but not a habit you really want to get into - Novorapid takes 20 minutes to kick in, so if you always inject after meals you are always chasing the blood sugar instead of having it ready to act when the food hits the bloodstream. This is particularly important in the morning, as an empty stomach absorbs food even faster, and most breakfasts tend to be high carb/high GI.

Sorry - I have managed to go on again.

Hi Tangarine

Nice to 'see' you back again! Any advice to offer a Mum tearing her hair out over a non-carb eating three year old? He's ruling the roost and we're going crazy. The latest is that he seems to have gone off bread so we've had a couple of days this week when he wouldn't eat his sandwiches for lunch and then today the monkey refused his breakfast - this is where I silently thank our paed nurse on a regular basis for suggesting injecting after meals, although I see your point as to why that's not a great idea!

Both your DS and Spidermama's DS were diagnosed at a tender age so maybe you have some words of wisdom?

Thanks for that informative post tangarine.

Millie1 - I really think that we have it so much easier with older children. I can't imagine the problems you must have.