insulin concerns...

[Rox000]

Hi hoping someone can shed some light on this.
My daughter 19 autism non verbal is on novomix bd for lifestyle purposes. Diagnosed t1 round about 8weeks ago.
I carb count and shes been having recently some significant readings differences at night and now during the day. Her bsl need to be a little higher than most8-10 as she cannot express hypo/hypers.
Eg. this morning sugars were 12mmol yes up so she is on a low carb diet gave her 2 slices low carb bread yoghurt low carb and i medium apple all agreed by the dietician as being optimum..i halved the apple as this bloody insulin has a mind of its own thinking it would lower her bsl slightly with the amount of 28u.
She signed to me she was tired and wanted to lie down...so unusual as this was i went to check her bsl for a random it was 13.0mmol . She only napped for 30min woke up vague...Her carer came and i said look before you go just let me check her bsl as the reading would then have been 2hrs after food...it was 5.4 a hypo for her....
So i treated it...of course. i ring the diabetic nurse who tells me ohhh it can happen...ummmm yea ok why？？？
im tired of general ans im freaking out now because it may mean that her bsls need doing even before she goes out. And the diabetic nurse is telling me to test her less...shes got rocks in her head if i didnt test she couldve collapsed out in the community....omg honestly im done with insulin it has become my BIGGEST enemy...

 

[EllieM]

Remember that as she's a new diabetic her insulin requirements will change once she moves out of her "honeymoon period". and her pancreas stops producing insulin altogether. Hopefully things will get better once she stabilises. I wish I could help you. Honestly I think some kind of continuous glucose monitor could be the way to go, but I know from your previous thread that you said she won't tolerate a libre...

 

[catapillar]

My daughter 19 autism non verbal is on novomix bd for lifestyle purposes.

Whose lifestyle? Do your daughters carers test her blood sugar? Do they understand how to treat a hypo? If not, why not? Testing blood sugar and treating hypos isn't a medical skill, DSNs will provide training for teachers in primary schools for type 1 kids, so will be able to provide the same to anyone looking after your daughter.

Novomix will require a fixed amount of carbs at meals and snacks at fixed times each day. It sounds like the amount of carbs required by the dose your daughter is on is yet to be determined - if she's at 12 or 13 I would suggest less carbs? If it's dropping her from 13 to 5 with a carby meals that suggests she needs a carby snack 2hrs post meal, everyday. Is your daughter amenable to eating every 2hrs, every day?

Novomix has a mix of fast acting and long acting insulin. What novomix are you using? With novomix 30 the mix is 30% fast acting and 70% long acting. With newly diagnosed honeymooning type 1s they do often need more long acting than fast acting, occasionally a newly diagnosed type 1 can be fine on only long acting insulin for a little while. The response to eating insulin production can hang around for a little while, it can also appear rather erratically and shove out a bit of unexpected endogenous insulin in response to meals as part of the honeymoon. When using mixed insulin you don't have the option of reducing or omitting unneeded fast acting insulin unless you also reduce the needed long acting insulin.

A more modern, flexible basal bolus regime will let you alter doses as demanded by the honeymoon. Or by not wanting to eat the same quantity of carbs at the same time every day, or wanting to do some unusual activity, like go for a walk.

A mixed insulin regime doesn't mean less testing. I don't follow on what basis an old fashioned rigid regieme had been chosen for "lifestyle purposes"?

it was 5.4 a hypo for her....

5.4 is not a hypo, for anyone. It might be a false hypo because your daughter is running high. If you treat the false hypo and maintain the highs you are not going to be able to get her body used to normal blood sugars and she will just stay high. A basal bolus regieme allows you to step blood sugars down slowly. I'm not sure how that gradual step down would be worked on mixed insulin.

I think @urbanracer uses a mixed insulin regiem, he might be able to offer some assistance in figuring out how many grams of carbs the mixed insulin wants at meal and snack times. With mixed insulin you have to do what the insulin wants. The idea of basal bolus insulin is that you make the insulin do what you want.

 

[Rox000]

thanks how do i get in touch with @urbandancer？？

 

[Rox000]

caterpillar thnx for your reply. When i said lifestyle purposes i meant a few things.
Firstly she requires FULL care with all of her activities of daily living and a regime of 4 daily insulin injections would not be suitable as she is unable to administer them and i also for financial reasons need to work. The specialist was more concerned about how she would adjust to 4 injections a day so he felt 2 would be kinder to put it bluntly.
Believe me i run a tight ship with my carb count for her that morning 12 was extra that the nurse advised me to give to her before bed because of these drops she had been experiencing.
re her eating habits ...she already does eat 2/3 hrly and sugars have been steady and doing well for a nuumber of weeks before these big drops reared their ugly heads.
Im no expert of course but as a lay mum my gut is telling me i need to reduce her morning insulin somewhat and see what plays out.
She needed a 50% reduction in doses both am and pm round about week four when discharged from hospital..and that was me pushing to have that due to the amount of low readings she was having.
Its physically impossible for me to get her to supposed normal 4-7mmols as knowing when she has symptoms of hyper/hypo is going solely on my observation...please take time to understand that...
i already prick the poor girls finger 20+times a day...i just want to get it right...its not fair its just not fair....thanks for your comprehensive reply ...always appreciated

 

[slip]

Normally on a mixed insulin it is a set amount that never changes (well not on a daily bases), and the carbs consumed match the doses of insulin. Its a fine balance of getting the right fast acting to match the meal and just the right amount of slow acting to keep the BG level until the next jab or knowing what carbs are needed to keep it level though out the day. The honeymoon period will kick up a few unexpected highs and lows and is just one of those things what ever regime you're on.

Once things have settled down there is no reason why your daughter can be in the normal range every day all day most of the time, and the number of tests will decrease once both you and her get use to things.

I would suggest the Libre, saves those 20+ tests (doesn't completely eradicate them) - are you sure she wouldn't go for it? (and I'd assume you'd have a good case for getting it on prescription)

It will get easier.

 

[Rox000]

slip thanks i know theres no crystal ball as to how long it will take before things settle down..i thought they were tbh given her better numbers ...but can i be ignorant and ask how long can it take ？i have a friend whose daughter is t1 and she says she after 1 yr is still trying to get her levels sorted. ..

 

[slip]

I can't answer that I'm afraid, much as I'd love to! 6 months, a year? anyones guess

 

[urbanracer]

thanks how do i get in touch with @urbandancer？？

Hi @Rox000 , if you're still around I apologise for not getting back to you sooner but I've been travelling and (surprisingly in this day age) have not had access to the internet.

I have been using mixed insulin for over 3 years and it's a pain. When I started out, the hospital gave me Novomix30 and my blood sugars were all over the place for about 12 weeks. My GP replaced the prescription with Humalog 25Mix and I was amazed at the difference. Everything settled down within a couple of days of starting this insulin.

How are things going for you now?