diabetes help please!!

[bramblebooks]

I could just do with a bit of general 'just keep going love'. pleeeease!

ds2 (7) was dx'd diabetic about 3 months ago. His blood sugars are barmy at the moment and today went so high that the meter wouldn't read it.

I really am not sure what I'm doing wrong and his diabetic nurse is on his hols until next week - I'll contact him then and talk things through.

We've swapped from novamix during the hols to try to get us used to using novarapid with each meal and some snacks. He has a longer acting levemir injection each evening, which I've just increased as his waking readings have been 12 or so for the last couple of weeks.

The diabetic nurse suggested just 2 or 3 units of the rapid acting insulin with meals, and I try to add more to compensate for him being high - but I really can't seem to get a grip on getting his numbers lower. We're not carb counting and matching that to insulin yet, which might be a way forward. Any thoughts or useful websites?

Just exasperated and frustrated. Poor lad gets really shaky and hyper anxious with high blood sugars.

Off to start the bedtime routine, I realise that there may not be many of you out there who are dealing with diabetes, but will look in later this evening and hope for the best. thankyou. x

Hi again,

I'm not sure what pain she had when she was really high because obviously she can't talk yet but when she used to go over 16 she would get really cross, hitting everyone and screaming. The highs caused problems at night too, we found that she would need changing at night because of the constant weeing and she couldn't sleep properly either.

I'm not sure why you've been told that about pumps, if your consultant prescribes one the PCT has no choice but to fund it. There are criteria under the NICE guidelines but the main one is that if control is poor (ie in our case, my daughters HBA1c was always in the 8s) then a pump would improve things.

I'm not saying a pump is the answer to everything, or the right choice for everyone. I know lots of children have really good control on injections too. You're right to think it through.

Are your team giving you advice about correction doses/carb counting/meal ratios. All these things seemed to help us a bit.

Whereabouts in the country are you?

How are your ds s levels now you've corrected? I hope he is feeling a bit better now.

How are you coping? I still have teary days and the sleep deprivation has really got to me too...I hope you can have a bit of time to yourself too, it sometimes feels like diabetes rules everything...

Sorry just re read my post...fr too many questions!

.. pumps - apparently our consultant hasn't yet prescribed one to anyone in clinic, but only to people who've made a separate appt to see him ?!?!

A bit woolly advice about correction - ie, give it a try at 1 and then work up, see what works for him. No advice as yet re carb counts, going to ask for that next appt. Haven't a clue what meal ratios are.

Cheshire.

ds's levels were relatively low for this week; 18 when high, gave him 3 NR but he had a couple of cheese crackers and was 14 on checking 2 hrs later. Gave him 5 NR with his tea (of which he ate little, pasta, apple, cereal bar - trying to avoid the very sugary puddings) and he was 17 2 hrs later. I give up! So... at that point he had a yoghurt and some plain popcorn for supper with an injection of 5.5 NR.

I will now open the wine. ^^ figures a couple of weeks ago would have dropped him right down.

I am having a tough time at present - sleep deprived, trying to work part time in a demanding job and run the household. OH does his best but it can be harder work trying to explain it/talk it through to him due to his blokishness 'solve it' mars and venus response iyswim.

There seems to be no rhyme or reason to levels sometimes...its so frustrating.

DH is good but works long hours so I've tended to take over most of my dds care, she's 2 now but I also have another dd who is 3. I can relate to the "solve it" mentality of men though!

We're in North London and my dds consultant referred her for a pump at diagnosis, before we even knew what a pump was!

On injections we had ratios for meals, so breakfast was 1:25, ie 1 unit of novarapid per 25 carbs, lunch was 1:35. This was because she would always have a big mid morning spike and so needed more at breakfast. Once we'd got our head s round this her levels did improve. You vcan see if a dose is correct by testing 2 hours after a meal and in theory it should have returned to what it was pre meal, ie if 7.0 before lunch, 2 hours later bg should be around 7.0 for dose to be correct.

Hope that makes sense!

oh crikey!

I did mention carb counting to DH, but once I mentioned using a calculator and adding things up he pulled a face and a tantrum.

A bit of denial?

Somewhat fed up with being the main carer.

He's read some of the early posts on here and thinks that he can now insist on the 2 injections a day regime ... oy vay! I think I'll take myself and ds s to a remote mountain village with a supply of wine and food.

I'm doing bloods before and then 2 hours after each meal, but what you say makes sense, I think the missing link is the carb counting and ratios. The advice we've had so far is to check bloods after the meals and then to adapt the dose - however, this only really works if he has exactly the same meals and the same quantities repetitively, which isn't terribly practical.

It must be so hard managing all this with work too. I gave up work (part time teaching) when dd2 was diagnosed, she was in quite a bad way at diagnosis, we were in hospital with her for quite a while.

How is your sons school coping with managing the diabetes in school? I'm a bit worried about this already, not sure whether to try for a statement of SEN or not.

Son's school is very supportive and have been blood testing him. They have offered to get training as and when he needs to inject at school.

He won't get a statement of SEN for the condition and won't qualify for the lower level of funding either.

From what I understand, it does depend on the school's experience how 'good' they'll be. However, I'm pretty convinced that our children have rights under the disability act. It's just a question of good communication and being reasonable?!!?

I believe that some funding is being issued in our county at foundation stage (nursery and reception age) for support for children with diabetes, so that they can be carefully monitored for hypos, blood tested, etc at nursery, etc. It might be worth your having a word with your health visitor about that in preparation for starting nursery.

We were only in hospital for 3 days with ds. It must have been grim for you with such a little one.

Work have been pretty good, but I do go through phases of needing to stop. The extra stress of the illness just doesn't go well with a stressful, responsible job (I have some pretty major responsibilities), a family and generally having to deal with it all at home alone. I'm going to keep going though, as most days at work help me to keep some sort of sanity.

Thats reassuring, Its good to hear of schools being supportive and fulfiling their duty of care. Because dd is on a pump it is going to need someone to blood test, make sure lunch is eaten and give bolus' on the pump for meals and snacks as and when. As she gets older she'll be able to do more of this herself....not for a while yet though!

I think I'll set up a meeting with our local school and see what they say.

I know what you mean about work giving some sanity, I want to get back when the girls are at school.

Yes it was a bit grim...dd was misdiagnosed ny 2 GPs and we ended up in A and E with her in ketoacidosis (semi conscious)...could have been really bad, we had her home after 10 days.

Off to check bloods now, and then off to bed...not sure if you've subscribed to CWD yet, the moderator is Jackie, if you join she'll add you to the list and you recieve all the emails , people post in with questions/share experiences etc... Maybe see you there?

I really hope things settle down a bit soon...

Thanks lulu - I'm on a couple of email lists - is that the one?

See you on the boards again soon! Take care.

Ooh I don't know, the one I'm on is CWD Uk, someone did a link for it earlier...its been a lifeline for me recently, a very friendly crowd! If you appear there I will make myself known!

Take care

Hi
Sorry to hear about your son. Go check out www.diabetesforums.com and www.diabeticmommy.com for help & advice. They are both great sites & although US ones there are UK people on them too.
It does seem to me that because you do no tknow his insulin to carb ratio it will be very difficult in managing his disease & his blood sugars will go high or low. Ask your diabetic nurse about going on a DAFNE (Dose Adjustment For Normal Eating) Course or IDAC (Insulin Dose Adjustment Course). I did a few years ago & it really helped me even though I had managed to work out my ratios. I think it is good that your son is no longer on the Novomix as that is regimented & he has to eat the same number of carbs & at about the same time each day. Being on Levemir & Novorapid will give him more freedom.
Good luck. If you need any help please don't hesitate to ask )

Thanks, I'll look into those.

We're back on the mix for school days for the time being - not ideal, but we're looking into going onto 2 injections in the morning - rapid and insulatard. School have been brilliant so far, but there would be an awful lot involved for them to have to start to inject him and for him to let them.

His insulin needs have rocketed up and I gave him a large dose of novarapid with his tea, heart in mouth, even that left him slightly high.

He's noticably calmer, having had a day with readings in the low teens for the first time in days.

Yeah that's true - I was 8 when I was diagnosed & being on 2 injections per day meant I could let my Mum do them before breakfast & tea. I'm sure you will get there - I know it involves a lot of hard work. All the best

I read threads like this and posts on the CWD group and I really wonder if I'm being lax.

My DS is on mixed insulin in the morning, Novorapid for the evening meal and Insulatard overnight. We NEVER carb count. I wouldn't know how to start.

After reading the experiences of others I thought I'd better bring this up with DSs diabetes team, which I did, but they seem to think it's unecessary.

DS's HbA1c was 7.2 last time, which I was very pleased with. Previously it's been 8.7, 8.2 and 7.9.

I just wonder why my experience seems to be at odds with others.
Is carb counting ALWAYS a good idea?
Would you other mums be content with a mixed insulin regime if you were getting these HBA1Cs?

Have you seen this by the way?

Don't worry Spidermama! 7.2 is great for a a1c!

I don't carb count either and i'm on MDI (novorapid and levermir). I do adjust my dose depending on what i'm eating but i definitely don't have a ratio.

That said i've had diabetes since i was 9 so i kind of know by experience now how much to have.

My last HbA1c was also just over 7!

Were you happy with that Paddy? Or do you feel you'd like to get it down more? I was thrilled with DS's reading but then I worry that I'm not moving on to a regime with tighter control.

Another plus point for the Mixtard 30 is that he doesn't need to inject at school. The school is pretty hopeless so he really has been forced to take charge of his own blood tests. Most days though he just goes through school without having to do anything.

I also wonder if I should be more interested in pumps. Have you never wanted a pump paddy?

Hi Spidermama,
I think ac1's in the 7s are good...this is wat we are now aiming for on the pump. We now correct down any bg readings over 10mmols. This is so weird for us as theres no way we could have done this on her old regime. The pump offers tenths of units as a dose so this was a big reason for us to go down this route.

I think that if a regime is working well for a child then why not stick with it? For our dd though MDI simply didn't work, she'd either be too high(we regularly had readings in the teens 2 hours after food). or she would crash low and have to be given snacks to keep her up before the next meals. Nighttimes especially were awful, we had no choice but to keep her high as half a unit correction would bring her too low.

From speaking to her consultant many newly diagnosed toddlers are being referred for pumps as they suit faddy eating habits and the smaller doses required by little ones. Obviously with her being diagnosed so young we were worried about risks to her future health and wanted to keep control as tight as possible.

Our local hospital didn't give us any input on carb counting, it was only when we got referred to a larger teaching hospital that we had the input from dieticians and specialist nurses.

LR x

Hi Spidermama

I was really happy with my A1c. The regime works for me, have have D for 23 years and so far have no complications so must be doing something right!

i've thought a lot about pumps as whenever i read about people who have one they rave about it.

But tbh i don't fancy the idea of being hooked up to something 24/7. Especially sleeping with it on and doing sport etc.

If your DS is happy as he is and is getting good A1c's you have no need to worry!

Hi All

Spidermama ... what are your DS's BGLs like on Mixtard - overall? We're having real problems at the moment - either too high or too low, and for the first time we're finding him dropping a lot overnight - have only caught one hypo but it's rattled us. Yet our last A1c was 6.9. Clinic think this is great - and it is good but we can't help but think about all the lows mid-morning because he won't eat breakfast and all the highs at other times (overnight until recently and sometimes after lunch) and wonder if the A1c is giving us a true picture of what control is really like. On the other hand, Mixtard doesn't intrude on his day and we have had periods where we have had lovely readings. It's just frustrating and worrying at the moment.

Hi All - things seem to be better since we really increased the insulin and got his numbers halved. He's still running in the early teens, but we've had a couple of readings below 10 this week. Importantly, he seems calmer.

I've been put in touch with a local parent who has a child the same age - very excited about meeting up and seeing how things work for their family.

xx

Hi Bramblebrooks ... my apologies for not saying hello before - rushing as usual! Sorry to hear about your son and problems stabilising his blood sugars. It just seems an impossible task at times but you'll get there. Have things levelled out a bit over the last week? It would be good to meet someone with a child of similar age - hope the meeting goes well.

Hi Millie - he's been so much better since his sugars have been in the teens rather than in the 20s. We will get there, I'm sure. Big sigh!

Meeting someone your own age, makes a big difference. I bet your ds will love that.