On a pump, every 2 - 3months control goes completely with ketones + highs

[September 08]

Hi I'm a mum to a 20 year old son who's had Type 1 for 6 years. He's been on an accu chek pump for 3 years and recently has had lots of problems hence my joining the forum. I'm hoping someone out there might have some words of wisdom as his DSN can't seem to suggest any new solutions. Every 2 to 3 months of being 'normal', he suddenly and for no apparent reason goes massively high (over 25) with ketones (also massively high - the worst time they were up to 5 and he ended up in A and E). His diabetes team just keep telling him to do what he is doing and gradually over the course of the day with constant checking and injecting, temporary rates and copious amounts of water he's back to normal by bedtime. The next day the same thing happens again - or maybe not - he can then be fine for weeks. We are in a spiral of this recurring - he is getting depressed, keeps taking time off work and I'm at my wits end. Is there anyone with any ideas please?

 

[donnellysdogs]

Hi

Sorry you had to join forum (so to speak!!).

Our bloods do change. There are rules to follow for high's.. Does your son follow these rules? Ie
A) over 12, and you may well have to give more correction dose?
B) Check the needle inside the connector if using rapid d's.... These can bend without necessarily knowing it. I only got told this a couple months ago after 4 years of accuchek pumping. Apparently that is a large reason for unknown highs.
C) change everything as soon as an unexplained high occurs. I man everything.
D) finally going to use a pen to deliver a correction dosage.
E) testing at least every 2 hours at least, even when sleeping
F) if the sets are a tad uncomfy when putting in, does he still put them in or does he change area? If they aren't 100% comfy then my logic is "with any pain, set change.

Finally, some sets can be faulty... Or hitting bad sites, or the lueur lock has become loosened accidentally. I had a batch of tubes which the lueur locks loosened and caused hassle. I had a number of sets that caused problems. I always report every problem to accuchek if it isn't my fault. They take a note of batch numbers, what you have done etc and will listen to you and if there are problems will send you replacement sets /tubes or even pump if necessary.

It is important to tell accuchek if you have unexplained highs and they aren't down to a bad site, blood in tube etc.

Also, flexlink plastic sets don't always give 100% good readings... For me and others I know of the rapid d's do give more consistent readings and less occlusions. Most people I know also use their 6mm rapid d sets. Don't get me wrong, you can still get problems and I have reported them from day one myself from when I realised a set (since withdrawn) was faulty....

 

[CarbsRok]

As the blood sugars change every couple of months perhaps set up another basal pattern so he can just switch over to the higher basal when needed.
Has your son kept or thought about keeping a diary to see if there are contributing factors to the sudden high blood sugars?
Like your son my bloods do this as well and I have learnt that as soon as I see more than a 3 point rise in my numbers I need to up the basal very quickly.
Has your son got access to a CGM he can use to see exactly what is happening? Another suggestion is that when he starts to go as high as that he needs to consider cutting right back on his carbs esp the starchy carbs.

 

[September 08]

Hi

Sorry you had to join forum (so to speak!!).

Our bloods do change. There are rules to follow for high's.. Does your son follow these rules? Ie
A) over 12, and you may well have to give more correction dose?
B) Check the needle inside the connector if using rapid d's.... These can bend without necessarily knowing it. I only got told this a couple months ago after 4 years of accuchek pumping. Apparently that is a large reason for unknown highs.
C) change everything as soon as an unexplained high occurs. I man everything.
D) finally going to use a pen to deliver a correction dosage.
E) testing at least every 2 hours at least, even when sleeping
F) if the sets are a tad uncomfy when putting in, does he still put them in or does he change area? If they aren't 100% comfy then my logic is "with any pain, set change.

Finally, some sets can be faulty... Or hitting bad sites, or the lueur lock has become loosened accidentally. I had a batch of tubes which the lueur locks loosened and caused hassle. I had a number of sets that caused problems. I always report every problem to accuchek if it isn't my fault. They take a note of batch numbers, what you have done etc and will listen to you and if there are problems will send you replacement sets /tubes or even pump if necessary.

It is important to tell accuchek if you have unexplained highs and they aren't down to a bad site, blood in tube etc.

Also, flexlink plastic sets don't always give 100% good readings... For me and others I know of the rapid d's do give more consistent readings and less occlusions. Most people I know also use their 6mm rapid d sets. Don't get me wrong, you can still get problems and I have reported them from day one myself from when I realised a set (since withdrawn) was faulty....

Thanks for your reply. Yes, my son does all the things you mentioned. He uses the flexlink cannulas with an inserter device which he says is painless so he changes the cannula every 2 to 3 days normally, daily if running high. He changed to these from the rapid ds to see if that made a difference to the high readings some months ago! He uses a pen straight away if BG is above 14 and has ketones. We will check the lueur lock on the next cannula carefully. Regarding the testing overnight - he can be fine at 4am then by 7am is 19+!

We've never been told how to calculate the correction dose for ourselves - the meter does it all for him. We tend to just guess - often doubling what it suggests but that's not very accurate.

Will give accuchek a ring tomorrow- that's a good idea, thanks.

 

[September 08]

As the blood sugars change every couple of months perhaps set up another basal pattern so he can just switch over to the higher basal when needed.
Has your son kept or thought about keeping a diary to see if there are contributing factors to the sudden high blood sugars?
Like your son my bloods do this as well and I have learnt that as soon as I see more than a 3 point rise in my numbers I need to up the basal very quickly.
Has your son got access to a CGM he can use to see exactly what is happening? Another suggestion is that when he starts to go as high as that he needs to consider cutting right back on his carbs esp the starchy carbs.

Thank for the reply - so helpful to know other people don't just tell us to do more of the same!!
He keeps a diary but he's not very level anyway, there's often ups and downs.
He used a CGM three years ago for 3 days - that's one of the reasons he was put onto a pump as he couldn't control highs on MDI.

Good idea about the low -carb diet - have suggested it to him and he's concerned about being hungry all the time - is there somewhere I can go for more info on this?

Thanks again.

 

[CarbsRok]

If your son's levels are up and down and all over the place then he needs to do some basic basal testing. If the basal is wrong then he has no hope of sorting out his levels.
Perhaps invest in the book pumping insulin by John Walsh, this can be bought from Amazon as is known as the pumpers bible.
There's quite a lot of info on the forum regarding low carb diets etc. I can't advise you about them as don't low carb, as soon as my blood sugar starts to rise for no reason then I just skip a meal and test the basal.

 

[donnellysdogs]

As a norm... Does your sons levels normally come down to the normal target level within 5 hours?

Do you change basals and bolus's yourselves?

 

[donnellysdogs]

Agree with @CarbsRok.

Reading more, it would seem as if the balances being achieved daily aren't ideal.

I know that @martina with a younger childer sometimes struggles with levels, but with her child it is school holidays and different activities than when her child is at school. However, she does a lot of testing, keeps to the same carb qtys at each meal and on a daily basis generally manages until holidays make a blip or cold weather!
Meals are different but as an example she has different foods for breakfast but keeps to the same carbs each breakfast so that her child has consistency.

I think it is more likely to be your son's body than pump problems from what you have written.

Another pumper here was having problems with pump and dka's.. She hadn't even been given the advanced menu to be able to alter anything, and now has a much improved control and stays out of hospitals and can realise her own body or pump failures etc....

I think like Carbsrok says you need to go to basics. Low carbing is gorgeous food still... He won't go hungry, be sure of that!!

 

[September 08]

If your son's levels are up and down and all over the place then he needs to do some basic basal testing. If the basal is wrong then he has no hope of sorting out his levels.
Perhaps invest in the book pumping insulin by John Walsh, this can be bought from Amazon as is known as the pumpers bible.
There's quite a lot of info on the forum regarding low carb diets etc. I can't advise you about them as don't low carb, as soon as my blood sugar starts to rise for no reason then I just skip a meal and test the basal.

Thanks - just ordered the book.

 

[nikkid]

Pumping insulin is a very very good book with lots of useful information and step by step guides on how to test basal/bolus/carb/correction factors etc worth it's weight in gold!