Mom to a type 1

[T1 mom]

Hi everyone. I'm new on here, never joined a forum before. I'm a mom to a 6 year old type 1 child. He's been type 1 for 2 years now. Life has been a rolacoater since his diagnosis- good days and awful days like today. Today he had a blocked cannula for his medtronic pump so he obviously wasn't receiving insulin. We only realised after he had lunch and his blood sugar reading just kept climbing. After changing his cannula we noticed a bend in it, which was obviously stopping the insulin flow. Has anyone else had this problem? We try so hard to keep him within range, but occasions like today really get us down, seeing him reach such high numbers. Anyway, I'm happy that I've found this forum and able to ask questions here.

 

[Inka]

Welcome @T1 mom 🙂 Yes, I’ve occasionally had bent cannulas. I’ve also had ‘bad’ sites with poor absorption. I think this is just one of the few problems with pumps. The pumps themselves are fab but the sites sometimes let us down!

I’m an adult but there are a number of parents here and some of their children use pumps too.

 

[stephknits]

Hi and welcome to the forum. Another type 1 mum here, but my type 1 is 17. Also have type 1 myself. My daughter is on MDI as she doesn't want a pump, but I have an omnipod. No tubes, so do t have problem with that,but other problems do occur and I agree are very frustrating. I find I feel worse when my daughter has an issue than when I do - mum guilt I guess!

 

[Thebearcametoo]

Hi and welcome. We sometimes have issues with my daughter’s cannula or site (she’s 10) and have to change it. She has a dexcom so we can see what’s happening without having to wait for a finger pricks at meal times. If you find it happens a lot then talk to your team as there may be a metal cannula option but if it’s rarely happened then it’s just one of those things that sometimes happens with a pump.

 

[Sally71]

Hello and welcome to the forum! Can I just ask, how long has your son had his pump, because if you’ve managed to last 2 years with only one cannula failure then you are doing amazingly well! Yes it happens sometimes, don’t beat yourself up about it, you sorted the problem out as soon as you realised something was wrong and that’s all you can do.

Unfortunately with type 1 it’s impossible to have perfect numbers all the time, as a mum that doesn’t stop you trying I know, but you do get some days where it all goes wrong and you just have to try again tomorrow. If you can see a reason for the problem that’s great, sometimes you can learn something from it, sometimes you have no clue what happened which is a lot more annoying but c’est la vie! You are doing a great job 🙂

If this turns out to be an isolated incident then I wouldn’t worry about it, if it starts happening regularly then maybe you could investigate whether there are any different cannulas that would suit you better.

My daughter is 14 now and starting to take over control of her own diabetes. Attached is a photo of her Dexcom track from the last 24 hours. Last night she had a reading of HIGH for over an hour, she did correction doses but it was only when she started to get undressed at the end of the day and the cannula came off in her hand when she removed her t-shirt that she realised what the problem was. Oops. New cannula and another correction dose later it all came back down again, then went a bit too far and she was low most of the night. Possibly we need to do some pump adjustments but we also have female hormones to deal with at the moment which tend to make her drop. And so it goes on! So far today numbers have been better, let’s hope it stays that way for a while!

 

[Pumper_Sue]

We only realised after he had lunch and his blood sugar reading just kept climbing. After changing his cannula we noticed a bend in it, which was obviously stopping the insulin flow. Has anyone else had this problem

Hello and welcome to the forum.
Yes I've had the same problem far to often.
What I do and please note I'm not saying do it yourself) is to bolus the correction and if it's high I double what the pump says to do and also set a 100% + basal for 2 hours. Obviously watching bloods like a hawk and if starting to drop turn off the temp basal and have a small snack so no hypo.

 

[SB2015]

Welcome to the forum @T1 mom . Glad that you have found us.

I use a pump with tubes. I have had the odd ones where the cannula did not go in properly, and also where I shot up whilst on a days walk. I checked the cannula and the attachment there, but did not think to check at the other end, where I had not attached it properly. We all get odd days when things go awry and high levels for a few hours is not going to do lasting damage.

As @Sally71 said if this is the first issue you have had in 2 years then you are doing brilliantly. All any of us can do is do the best that we can. It is complicated job we are each doing thinking like a pancreas, so it not a surprise that things don’t always go right.

 

[T1 mom]

Thank you. I'm going to look into other types of cannulas as mentioned in another thread. I do believe that the ones we have are not that good. Blocked cannulas are happening far too often with us now. It could also be down to the incersion area. He likes it done on his legs only, and although we do rotate the legs I think the skin does toughen after a while.

 

[T1 mom]

Hello and welcome to the forum! Can I just ask, how long has your son had his pump, because if you’ve managed to last 2 years with only one cannula failure then you are doing amazingly well! Yes it happens sometimes, don’t beat yourself up about it, you sorted the problem out as soon as you realised something was wrong and that’s all you can do.

Unfortunately with type 1 it’s impossible to have perfect numbers all the time, as a mum that doesn’t stop you trying I know, but you do get some days where it all goes wrong and you just have to try again tomorrow. If you can see a reason for the problem that’s great, sometimes you can learn something from it, sometimes you have no clue what happened which is a lot more annoying but c’est la vie! You are doing a great job 🙂

If this turns out to be an isolated incident then I wouldn’t worry about it, if it starts happening regularly then maybe you could investigate whether there are any different cannulas that would suit you better.

My daughter is 14 now and starting to take over control of her own diabetes. Attached is a photo of her Dexcom track from the last 24 hours. Last night she had a reading of HIGH for over an hour, she did correction doses but it was only when she started to get undressed at the end of the day and the cannula came off in her hand when she removed her t-shirt that she realised what the problem was. Oops. New cannula and another correction dose later it all came back down again, then went a bit too far and she was low most of the night. Possibly we need to do some pump adjustments but we also have female hormones to deal with at the moment which tend to make her drop. And so it goes on! So far today numbers have been better, let’s hope it stays that way for a while!

Hi Sally. He received his pump almost immediately after diagnosis in 2019. I think the NHS offer pumps straight away to children under the age of 5 as it's pretty difficult to use pens on them. My son refused to eat in the beginning as he realised that food=injection!! The pump changed everything for us. We've had many blocked cannulas but recently it's been a regular occurance. Definitely going to look into other cannulas of better quality.

 

[Pumper_Sue]

Hi Sally. He received his pump almost immediately after diagnosis in 2019. I think the NHS offer pumps straight away to children under the age of 5 as it's pretty difficult to use pens on them. My son refused to eat in the beginning as he realised that food=injection!! The pump changed everything for us. We've had many blocked cannulas but recently it's been a regular occurance. Definitely going to look into other cannulas of better quality.

Which cannulas are you using?

 

[Asherly]

Hi, my 3 yo is on the T slim X2. We had issues with auto soft kinking on pump start resulting in a high and ketones and so on second pump attempt we used tru steel. It sounds daunting and not so nice as the plastic ones but it’s really just like doing an injection and leaving it in. In preparation for attempt number 2 at pump start up I had my lad watch whilst I put one on and honestly it really was more comfortable than I imagined it would be. I’d maybe try a tru steel although it’s a 2 day site change advised which makes me sad but he is ok with that part maybe an option.

 

[T1 mom]

Which cannulas are you using?

Sorry for the late response. They are the ones given by the hospital team. Minimed mio advance.

 

[T1 mom]

Hi, my 3 yo is on the T slim X2. We had issues with auto soft kinking on pump start resulting in a high and ketones and so on second pump attempt we used tru steel. It sounds daunting and not so nice as the plastic ones but it’s really just like doing an injection and leaving it in. In preparation for attempt number 2 at pump start up I had my lad watch whilst I put one on and honestly it really was more comfortable than I imagined it would be. I’d maybe try a tru steel although it’s a 2 day site change advised which makes me sad but he is ok with that part maybe an option.

Thank you. It's so reassuring hearing from other parents who have had similar issues with their children. I will definitely look into these steel cannulas. But yes, early changing won't be nice.

 

[Pumper_Sue]

Sorry for the late response. They are the ones given by the hospital team. Minimed mio advance.

No problem 🙂 Oddly enough I use the quicksets which are the same cannula except you self insert, and I have had a lot of bent cannulas. So there's nothing you are doing wrong I suspect as others have been complaining there has been a very bad batch somewhere along the line.

 

[T1 mom]

Another blocked cannula ☹

 

[Thebearcametoo]

At what point did it get blocked?

I only ask as we’re having an issue with my daughter’s numbers in the 12-24 hours before the set change but only sometimes. If we’ve had a bent cannula we’ve had a pump alarm and it’s usually been in the first dose of insulin whereas with this the pump still works it just isn’t absorbing as well.

It’s fairly normal for us to get a rise as the set settles in but no occlusion alarm. We get round that by putting a temporary basal on at et change.

We were told that a large insulin dose can be more likely to get an occlusion alarm so to try not to do set changes before a meal or to stagger the insulin if we needed to.

I don’t know if any of that helps. I can go into more details if any of it seems to fit what you’re dealing with.

 

[trophywench]

Well I concluded yesterday that I must actually be charmed pump-wise - had a pump since 2011 and yesterday got my very very first ever Occlusion alarm. No hassle, it was new reservoir day and happened whilst priming the tubing. Ehh?? Held the tubing up to the light, about 5cm of insulin in it at the reservoir end, but simply would absolutely not go any further. Weird. Grabbed another tube, primed fine and dripping freely out of the business end. And by then husband moaning about the stink and his wet hands from re-attaching me to the cannula in my bum!

Incidentally - we both think Novorapid doesn't stink quite as much as it used to - used to be enough to clear the sinuses !!

 

[everydayupsanddowns]

Sorry to hear about the blocked cannulas @T1 mom

They are a really draining and frustrating part if pump therapy

Are you still using Mio Advances? I would imagine it’s pretty tricky to get to see DSNs etc under current circumstances to ask about this sort of thing.

Has he tried angled cannulas? (i’m not sure but I think mio advance are 90-degree?)

I have had much more success with angled infusion sets, and have far fewer failures these days. It used to be several times a month at one point!