parents of children with type 1 diabetes - advice please

[Helinher30s]

Hi,
My sister in law has a DD aged 4 and a half with type 1 diabetes, diagnosed last year. They really seem to be struggling to manage her sugar levels - this morning for example she is poorly again, been vomiting etc with a sugar of 20 after the mornings insulin! everytime we see her and she has her sugar tested it seems to be around 20 or 22 - before insulin that is. Is that high? I know she had a fit before xmas due to low blood sugar level. My family are just really concerned that this little girls blood sugar is so up and down, I know it must be difficult to manage to keep stable but she is allowed to eat everything - does this sound right to you? many thanks

Not got a child with type 1 but i've got it myself, have had it since childhood...20 is high, normal is about 5 but i would expect to go up to 10 after food...if i was as high as 20 i would start to feel ill...on the other hand if she is ill cos she has a virus for example her levels with be higher than normal

With regards to what she eats it very much depends on what insulin regime she is on..if she is on a long lasting insulin at night eg levemir and a fast acting eg novorapid before food then she can pretty much eat what she wants so long as it is worked into her insulin doses..but if she is on the mixed insulin given only once or twice a day then things will be more restricted

My dd was dfiagnosed at 3.5 years and she has been pretty good - i do not agree that she can eat whatever she wants - even if she is on a novorapid thing with food caution still needs to be exercised - some children are more unstable for sure but it is worth trying a pretty samey diet, regular snacks and meals (as it should be abyway) to try and get it under control - personally i would be panicking if my child was testing this hig all the time - normal bloods should be between 4 and 10 - so 20 is twice the max she should ever be.

They need to go back to their diabetes nurse and try to implement a more strict regime, either that or switch to a basal/bolus regime

In short - yes something needs to be done as the lnog term damage for this child will be significant if it carries on.

I have a dd with type 1 (nearly 2yo now). 20 is pretty high. We aim for 4-8 and allow for up to 10 following meals. I would be v. concerned if high blood sugar was accompanied by vomiting and would be testing for blood ketones in that situation.
What do her diabetes team say? Does she have 3-monthly check-ups when her HbA1c is measured? This is a measure of her long-term control and our target is to stay between 6% & 7.5% (dd is 6.8% atm).
Re eating - we carb count everything dd eats and dose accordingly. So, if she eats 10g carbohydrate we'd give 0.4 units of insulin to cover the carbs.
All sorts of things can make children high, though: illness, growth spurts, stress hormones, mis-timed insulin, lower than usual activity, etc. It is certainly a challenge to keep then in range.
If your family is concerned I think they need reassurance that the girl and her family have good medical support and her condition is being monitored.

Agree with Oxymoron..if she's bein sick because of high blood sugar rather than cos she has a virus it is potentially v dangerous

i shouldn't think that bm of 20 would be making her sick, more likey has a virus and high bm because of that - my dd used to get high when poorly and now goes low..... oxymorons child is on the basal bolus regime which is much more precise than ours, mine is just routine and having been doing it for some time, my own patchy 'wisdom' haha - i do think this family need a bit of help to get things back on track, maybe they don't understand wuick and slow acting carbs and all that, it is a lot to take in for some parents so i reckon they need some assistance. Being really well informed and supported makes all the difference for children with diabetes.

Thanks for all your messages. its just difficult how to approach with SIL, I dont think the diabetes is being well managed to be honest but really don't know how to approach her with concerns, she's not exactly approachable. I will ask about diabetes team etc but have never heard anything being mentioned before. Apparently my niece is fine this afternoon so it seems the vomiting was linked to the high blood sugar. I am very worried. Thanks again

Does your sil perhaps have problems of her own with her dc having diabetes? Just a thought that she maybe not managing it well as she hasn't com to terms with what is going on and perhaps may need a lot more suppot?

Could also be that she is coming out of the honeymoon period...the docs will have mentioned that to your SIL...and that her insulin requirements have gone up...the diabetes team will have prob done a HbA1c to see how good control has been

Like paddy, not got children with it, but type 1 myself, for 35 years.
Doesn't sound good to me.
How often are they actually testing. Her daibetic team will be looking for patterns, and then suggesting adjustements.
Do the family feel supported, or do they feel they are out in the 'wild', as it were.
I feel so very very ill at 20. They need help.
I don't know what to suggest, re how to approch sil re this. very tricky.