Any tips for infusion set change

[Telle88]

Hi all, I'm looking for tips and advice on changing my 5 year olds cannula. We've been on the pump for a week now and it's a whole meltdown whenever it's time to put a new infusion set in. I tried doing it this morning but he cried, his brother cried and I cried. It's so overwhelming, no matter what I say or do it ends up being a traumatic experience for us all. Does anybody have any tips or tricks to make the process a little easier for him. He says he prefers having the injections and his brother is due to go on the pump soon too and he's now saying he doesn't want it either. I'm starting to agree with them. Any help is much appreciated

 

[rebrascora]

Hi. So sorry to hear that you and your family are finding it so traumatic. I have no experience of this myself but I am going to tag other regular parent members whom I am sure will have some helpful tips and reassurance. Also do speak to your team as they are also there to support you and will have seen many parents struggle with this issue.
@Thebearcametoo and @Bronco Billy can either of you offer any pearls of wisdom, hope and reassurance please.

 

[Inka]

How stressful for you all @Telle88 ! I have Type 1 and have a pump but I got it when I was an adult so can’t help really. I’ll tag a few parents of Type 1s for you who might have suggestions. I’m not sure all of them use pumps but they might be able to help @Bronco Billy @Thebearcametoo @Sally71

A pump is a massive change to start with and, even as an adult, I was very nervous for my first few set/cannula changes. What helped me was time and experience, and also reminding myself how many injections that one cannula change had prevented - ie one cannula for 3 days replaces 12 or more injections.

What pump does he use? What sets and cannulas? Have you tried YouTube? There are various videos of children having cannula changes and even doing it themselves. One child was very young, probably a similar age to your son. Is his pump ‘child-friendly’ - that is, does it have cool skins, cases, etc? Could you give a special reward for every cannula change to start with? Either a small toy or stars to save up for something?

 

[Telle88]

How stressful for you all @Telle88 ! I have Type 1 and have a pump but I got it when I was an adult so can’t help really. I’ll tag a few parents of Type 1s for you who might have suggestions. I’m not sure all of them use pumps but they might be able to help @Bronco Billy @Thebearcametoo @Sally71

A pump is a massive change to start with and, even as an adult, I was very nervous for my first few set/cannula changes. What helped me was time and experience, and also reminding myself how many injections that one cannula change had prevented - ie one cannula for 3 days replaces 12 or more injections.

What pump does he use? What sets and cannulas? Have you tried YouTube? There are various videos of children having cannula changes and even doing it themselves. One child was very young, probably a similar age to your son. Is his pump ‘child-friendly’ - that is, does it have cool skins, cases, etc? Could you give a special reward for every cannula change to start with? Either a small toy or stars to save up for something?

We've just managed to put a fresh set on now, his dad comes home for dinner so a bit of teamwork and it went brilliantly. He's on the ypsopump and at first we were using the orbit soft but kept getting occlusions and the team think his body was rejecting it so now we've just used the orbit micro and dad did a bit of distraction while I inserted it. Once we did it Logan, my 5 year old, said it didn't hurt as much as the old ones. I feel so sorry for both of my boys because they've no meat on them, just so lean

 

[Telle88]

Hi. So sorry to hear that you and your family are finding it so traumatic. I have no experience of this myself but I am going to tag other regular parent members whom I am sure will have some helpful tips and reassurance. Also do speak to your team as they are also there to support you and will have seen many parents struggle with this issue.
@Thebearcametoo and @Bronco Billy can either of you offer any pearls of wisdom, hope and reassurance please.

Thanks so much for your reply, we just managed to do a fresh change and using a different infusion set, he said this one didn't hurt as much so there's a positive sign

 

[rebrascora]

I find that there are areas within an injection site which can be quite sensitive and others where I can inject without feeling anything at all, so it may be the tissue at the site rather than anything different about the infusion. The problem is that you don't want to overuse those areas which don't hurt, but it can at least be helpful to make a mental note of areas which are particularly sensitive and try to avoid those next time. For me directly above my belly button seems to be pretty much painless. Sometimes just touching the needle to the skin will tell me if it is a particularly sensitive spot. I am guessing with a cannular that isn't really possible....but not sure of the insertion mechanism as I am still on MDI.

Hopefully some other parents will be along in due course but so pleased that you have managed with less pain and upset for now. I think I have read that there is a spray you can use to help numb the area or an ice cube or ice lolly held against the spot before insertion and then the child gets to eat it afterwards as a reward, to try to make it a more positive experience.

 

[Pumper_Sue]

Thanks so much for your reply, we just managed to do a fresh change and using a different infusion set, he said this one didn't hurt as much so there's a positive sign

Just a suggestion but is the infusion set a self serter as in you press a button and it fires in?

If this is the case then try a manual insert. I as an adult refuse to use the inserters due to the noise (anticipation of pain) I met a young lad many years ago who did give up on his pump due to this problem. His parents had no idea what the issue was until the lad started chatting to me as he had seen my pump.

 

[Telle88]

I find that there are areas within an injection site which can be quite sensitive and others where I can inject without feeling anything at all, so it may be the tissue at the site rather than anything different about the infusion. The problem is that you don't want to overuse those areas which don't hurt, but it can at least be helpful to make a mental note of areas which are particularly sensitive and try to avoid those next time. For me directly above my belly button seems to be pretty much painless. Sometimes just touching the needle to the skin will tell me if it is a particularly sensitive spot. I am guessing with a cannular that isn't really possible....but not sure of the insertion mechanism as I am still on MDI.

Hopefully some other parents will be along in due course but so pleased that you have managed with less pain and upset for now. I think I have read that there is a spray you can use to help numb the area or an ice cube or ice lolly held against the spot before insertion and then the child gets to eat it afterwards as a reward, to try to make it a more positive experience.

We used to do the injections in arms and legs as they're so lean! We actually used a bag of halloumi fries on his belly today, he decided he's having them for tea I will look into the numbing spray though thanks for the suggestion

 

[Telle88]

Just a suggestion but is the infusion set a self serter as in you press a button and it fires in?

If this is the case then try a manual insert. I as an adult refuse to use the inserters due to the noise (anticipation of pain) I met a young lad many years ago who did give up on his pump due to this problem. His parents had no idea what the issue was until the lad started chatting to me as he had seen my pump.

We do have the option of either the inserter or doing it myself. I agree with you about the noise I think that's Logan's thought as well that it's the anticipation of pain. I used the inserter today but I am considering the manual route once I have a bit more confidence to try

 

[Thebearcametoo]

Oh bless you. It can be really difficult. My 11 year old has theoretically had a pump for a year but we’ve had several breaks in that time including for the last month. We’re using tslim connected to a dexcom and when it’s on it gives great management but changes keep getting more difficult. She does all of hers and won’t accept help so we’re reliant on her doing it. One thing that helped us was letting her put it on before we had the set ready so there was less time pressure. It sounds like some teamwork is the way to go for you. There will always be times when kids (and adults) don’t want to do the injections or set change. I try to do a lot of validating the feelings without reinforcing how hard it is (I don’t want to push the idea that needles or cannulas are horrific but it’s true that managing it is a drag and sometimes hurts). Having a break is always an option (makes sure you have up to date basal in the fridge even when you’re using the pump). Reward charts or other ways of validation can be helpful (we often get takeaway on a pump change day). Lean on your team. They’re there to support you as well as to help with the practical side.

 

[Telle88]

Oh bless you. It can be really difficult. My 11 year old has theoretically had a pump for a year but we’ve had several breaks in that time including for the last month. We’re using tslim connected to a dexcom and when it’s on it gives great management but changes keep getting more difficult. She does all of hers and won’t accept help so we’re reliant on her doing it. One thing that helped us was letting her put it on before we had the set ready so there was less time pressure. It sounds like some teamwork is the way to go for you. There will always be times when kids (and adults) don’t want to do the injections or set change. I try to do a lot of validating the feelings without reinforcing how hard it is (I don’t want to push the idea that needles or cannulas are horrific but it’s true that managing it is a drag and sometimes hurts). Having a break is always an option (makes sure you have up to date basal in the fridge even when you’re using the pump). Reward charts or other ways of validation can be helpful (we often get takeaway on a pump change day). Lean on your team. They’re there to support you as well as to help with the practical side.

I tend to wonder if it's because it is something new and he just needs time to adjust to it because I remember the fear he had when we first started using dexcom sensors but now he's absolutely fine with it. He loves having the pump and how easy it is instead of injections. He asks for a milky bar afterwards so I guess he could have one

 

[Inka]

We do have the option of either the inserter or doing it myself. I agree with you about the noise I think that's Logan's thought as well that it's the anticipation of pain. I used the inserter today but I am considering the manual route once I have a bit more confidence to try

I insert all my cannulas manually. I have a needle phobia and much prefer to do it myself and not have a device shoot them in. I also ‘pinch up’ as I’m quite slim.

 

[Telle88]

We do have the option of either the inserter or doing it myself. I agree with you about the noise I think that's Logan's thought as well that it's the anticipation of pain. I used the inserter today but I am considering the manual route once I have a bit more confidence to try

I insert all my cannulas manually. I have a needle phobia and much prefer to do it myself and not have a device shoot them in. I also ‘pinch up’ as I’m quite slim.

I'm a bit scared to try manually in case I go wrong and then he won't let me near him again. The pinching thing is also difficult because there's just nothing to get hold of, there was suggestion of putting it on his bum like the dexcom sensors but he's having none of it

 

[Thebearcametoo]

I tend to wonder if it's because it is something new and he just needs time to adjust to it because I remember the fear he had when we first started using dexcom sensors but now he's absolutely fine with it. He loves having the pump and how easy it is instead of injections. He asks for a milky bar afterwards so I guess he could have one

Bribery is good if it works

 

[Sally71]

Oh I do feel for you, unfortunately I don’t have any brilliant suggestions! My daughter was diagnosed at 6, accepted things well at first but then about 3 months in we had a cannula which didn’t insert properly and I had to inflict pain to remove it (think it was a one-off situation in that the inserter didn’t fire properly, it never happened again) and oh dear then cannula changes were an absolute nightmare! We had to chase her round the house, tried reasoning, getting cross with her, bribing her with chocolate, distraction, anything else we could think of but nothing worked and there were many tears (ours as well as hers!). Then after about 4 months it suddenly dawned on her that we weren’t taking no for an answer and the whole procedure would be a lot less stressful if she just let us get it over and done with quickly, and then to her surprise because she was more relaxed she discovered that it didn’t hurt so much after all! I tried inserting one manually once and got an occlusion a few hours later and had to change it, so never tried again (I’m obviously a bit of a wimp there...)
My daughter is 15 now and does it all herself and can hardly remember not being diabetic, so it does get better, honest!

 

[Inka]

I'm a bit scared to try manually in case I go wrong and then he won't let me near him again. The pinching thing is also difficult because there's just nothing to get hold of, there was suggestion of putting it on his bum like the dexcom sensors but he's having none of it

For the tummy, when you pinch what you basically doing is trying to move the skin away from the underlying muscle so that it doesn’t hurt. On my tummy I use my thumb one side and three fingers the other side to gather a hill/wide ridge of flesh. Hard to describe, but I hope that makes sense. I hold it loosely, I don’t squeeze.

I don’t know if you can really get inserting manually ‘wrong’ but I’m not familiar with that pump. I just remove the cover from the introducer needle, remind myself how it’s to go in eg straight in or at an angle, then forget all the attached bits and concentrate on pushing the needle in. I then stick down any bits needed, hold the adhesive patch gently and slowly withdraw the introducer needle. If I was trying on a child for the first time, I’d have another adult there to distract the child so I didn’t feel rushed. Once you get the hang of it, it’s easier and quicker than faffing about with the inserters in my opinion.

 

[Telle88]

Oh I do feel for you, unfortunately I don’t have any brilliant suggestions! My daughter was diagnosed at 6, accepted things well at first but then about 3 months in we had a cannula which didn’t insert properly and I had to inflict pain to remove it (think it was a one-off situation in that the inserter didn’t fire properly, it never happened again) and oh dear then cannula changes were an absolute nightmare! We had to chase her round the house, tried reasoning, getting cross with her, bribing her with chocolate, distraction, anything else we could think of but nothing worked and there were many tears (ours as well as hers!). Then after about 4 months it suddenly dawned on her that we weren’t taking no for an answer and the whole procedure would be a lot less stressful if she just let us get it over and done with quickly, and then to her surprise because she was more relaxed she discovered that it didn’t hurt so much after all! I tried inserting one manually once and got an occlusion a few hours later and had to change it, so never tried again (I’m obviously a bit of a wimp there...)
My daughter is 15 now and does it all herself and can hardly remember not being diabetic, so it does get better, honest!

Both of my boys were diagnosed just after turning 3 so they're the same in respect to your daughter and only know being diabetic. The thought of doing it manually bothers me at the moment. I do think over time he'll get used to it like with the dexcom sensors, at first it was a whole lot of crying and arguing over who went first and now they're both done in under 5 minutes! When dad helped today it was a lot easier so we're making plans for him to finish work a little earlier on the days it needs changing so we can both be there for him

 

[Telle88]

For the tummy, when you pinch what you basically doing is trying to move the skin away from the underlying muscle so that it doesn’t hurt. On my tummy I use my thumb one side and three fingers the other side to gather a hill/wide ridge of flesh. Hard to describe, but I hope that makes sense. I hold it loosely, I don’t squeeze.

I don’t know if you can really get inserting manually ‘wrong’ but I’m not familiar with that pump. I just remove the cover from the introducer needle, remind myself how it’s to go in eg straight in or at an angle, then forget all the attached bits and concentrate on pushing the needle in. I then stick down any bits needed, hold the adhesive patch gently and slowly withdraw the introducer needle. If I was trying on a child for the first time, I’d have another adult there to distract the child so I didn’t feel rushed. Once you get the hang of it, it’s easier and quicker than faffing about with the inserters in my opinion.

I think I understand, sort of pushing rather than squeezing. I think because it's so new we're all a bit nervous and I'm sure over time we'll get used to it and look back wondering what the fuss was!

 

[everydayupsanddowns]

I'm a bit scared to try manually in case I go wrong and then he won't let me near him again. The pinching thing is also difficult because there's just nothing to get hold of, there was suggestion of putting it on his bum like the dexcom sensors but he's having none of it

I’ve tried manual and actually I prefer using a ‘serter’… The cannula is a bit more resistant than a needle and I generally found I had to bang it in pretty hard to get it to push through the skin without it just making a dent, but not actually breaking through (possibly a technique thing, but I’ve done various self insertions including a whole box of tSlim sets for which there *is* no inserter).

Glad you (and he!) had a better experience with the other type. Hopefully this will be the start of a turning point. I can just imagine set changes becoming ‘Milky Bar time’ and you can even use the carbs as the first small bolus to push through some insulin and help the site to bed-in. 🙂

 

[Bronco Billy]

Hi @Telle88, your post has brought back some memories 🙂

It’s great that your husband gets involved, a bit of teamwork goes a long way. It’s also great that you have found an area where it didn’t hurt so much. When the next change is due, use the equivalent area on the opposite side to help your son’s confidence. Try to involve him as much as possible in the decision making about where the new set will go each time. It can also help to numb the area with a sugar free ice-pop, you can then give him the ice-pop afterwards, which might act as an incentive. Fleshy areas work best, is the bottom a viable place for the cannula?

It will get easier, I promise.