advice please (again)

[Mini-Mimi]

hi all.
since my daughter was diagnosed (5 weeks now) i have basically blagged what i'm doing with her as i feel i've not had any support at all from her dsn, not even a phonecall just asking how were getting on with it, yes, they get back to me if i ring them but i really did expect them to be a bit more involved in these early days especially at the age she is, i understand they are busy with others but i dunno, maybe i'm just expecting too much, i know of other parents who have praised the dsn and said how great they are but i really dont feel that way about them at all, ive just been left to it and as you can appreciate a 3 year old is hard enough work, then factor in diabetes and well, like i say, it's tough at times and i am mainly just guessing at what to do or picking advice up from here.
anyway, can someone please explain to me, in simple terms, what keytones are, and what to do (this is something else that wasnt properly explained)
i have mainly got her levels stable (ish) during the day but after tea she does tend to go high, between 10-16, they tend to fall quickly and she always wakes up with her levels around 5ish so i'm not overly worried, but should i be?
at the moment she is on 6 units of novomix30 in the morning and 2 units at night. i want to change her over as this regime is very restrictive and i really do need more flexibility but i'm waiting for the dsn to get back to me about doing this.
sorry for waffling

 

[SophiaW]

Elevated ketones in the blood are a sign that her readings are too high for too long. The Abbott Optium Xceed test meter can also test ketones. The ketone strips are different from the blood glucose test strips but work in a similar way (i.e. you do a finger prick, insert the strip into the meter and test the blood). If you don't have ketone test strips ask your GP for a prescription because they are handy to have on hand when you're concerned about high blood sugar readings.

You really only need to worry about ketones if your daughter's readings are high for a period of time and the insulin is not bringing the reading down. This usually happens when the child is unwell. As a precaution I then test for ketones.

This is how I react to the ketone results:

Anything under 1.0 I do not worry too much about but make sure that extra insulin is given to correct any high readings. I keep testing ketones every few hours to make sure they don't rise too high.

Anything over 1.0 I would contact my DSN for further advice as these levels are above what I feel are acceptable. High blood sugars need to come down and keep testing ketones as these need to fall under 1.0 as soon as possible.

As for the contact you've had with your DSN I feel you musn't be shy about phoning to ask for advice. They'll probably assume you feel confident and are coping well if you don't get in touch to talk about any concerns you may have. Our DSN didn't make contact unless I had phoned to speak with her, but on the occasions when I have needed her advice she has been brilliant and very supportive.

 

[annettekp]

Hi

Sophie's advice is spot on. My son is 2 and we were told not to worry about ketones unless they were above 1 and then get medical advice. There will be some ketones present first thing in morning and that's normal. We use the optium monitor all the time.

Getting your daughters levels between 10- 15 at 5 weeks in, is good so don't beat yourself up. It took us 6 weeks to get them down to that level and that was with constant support from the dsn and upping insulin. Even now we struggle to keep then within the 5-10 range we were advised to - that's why we're waiting for a pump. Its now 10 months since Erland was diagnosed and yesterday his levels were 11.4, 17.2, 6.8,12.4, 9.9, 14, 5.6 and 17. It is not easy with a little one.

Keep on at your DSN for advice, that is why they are there and they do have a duty of care. Have you got the book by Ragnar Hanas -Type 1 Diabetes in children, adolescents and young adults. Its a good one.

Don;t get disheartened you're doing a good job.

Annette

 

[Mini-Mimi]

her levels during the day are usually between 4 and 8, sometimes 4 and 10, it's the tea time one i struggle with, its a battle with her cos sometimes she isnt hungry at 4.30, or she doesnt want to eat it all, or we may be out and have to rush to find somewhere to inject and eat. it seems i dont need to worry too much though,
i have the optimum exceed device too but went back to the accucheck one cos my little one struggles to open the foil on the strip (she's trying very hard to do the blood tests herself) so the accucheck one is easier for her to do.
as for the dsn, yes, she probably feels i manage ok and looking at Mia's levels i am, but it is hard to get them. i have to deny her things and i hate doing that, i will have a word with her when she sets back to me.

 

[SophiaW]

You're doing very well with those readings. Children's blood sugars are very difficult to manage. We use the Accu-chek meter for blood glucose testing, we prefer that meter, but keep the Abbott meter and a set of ketone strips for when we want to test ketones.

 

[leggott]

Hi. have you thought about switching to novorapid rather than the mix. My children were put on Novomix on diagnosis, but we found the it so inflexible and we were always correcting with novorapid when they were high. I know it means more injections, but you don't have to be so restrictive in what they eat and it makes it easier to correct the highs if you need to. Using The basal/ bolus system does also mimic more what the pancreas does, so hopefully you should be able to get the control a little tighter.

 

[Mini-Mimi]

i've got novorapid to use as a correction dose only, i've never used it yet, i was told unless it was really high not to, she had it once while we was in the hospital and she dropped really quickly, from 27 to 3 in a very short space of time with just one unit.
i really dont know about any other options regarding different insulins, i'm just stuck on this one and trying my best to muddle through,
she's due 2 units in 20 mins and has already told me she doesnt want any tea so lord knows what i'm going to do tonight!

 

[SophiaW]

I would urge you to get in touch with your DSN and discuss the problems you're having with your daughter not wanting to eat sometimes. The Novorapid and Levemir/Lantus (basal/bolus) would really work well in this situation. Ask your DSN about it and see what she says, if it will work for your daughter it will give you so much more flexibility. My daughter was also on Novomix 30 to start with and we found it incredibly inflexible and really didn't suit our lifestyle at all.