Behaviour

[Pumper_Sue]

For such a little chap having the Dex in his arm would be very painful so it's no wonder your little chap sobs.
Can you not stick it in the top of his backside with a large dressing over the top so he can not knock it off?
Personally I can not see him being allowed to have a pump due to the cannula being pulled out and the obvious DKA potential.
At £40 + for each sensor I can not see Dexcom continuing to replace them every day for you so you need to find a solution some how.

 

[Thebearcametoo]

Have you tried putting some vet wrap over it when it’s on his arm or a tegaderm dressing over the sensor? It might give it more life. I don’t know if the dexcom needs a little breathing hole like Libre does or not but someone who uses one will know. The vet wrap comes on and off easily but adds a good anchor layer and padding. The tegaderm may cause more issues if it’s hard to remove once on.

What is it about the dexcom that you particularly like? I can see how the data is helpful and especially alarms but right now it’s causing issues. It may cause you less anxiety to have less data but be fighting less. I know you’ve got used to what the dexcom can tell you but with it failing so often it may work better to have a break for a bit and go back to basics.

 

[Thebearcametoo]

Do keep your team in the loop both about the practicalities of what’s going on and how you’re feeling. I know my husband and I had huge issues with anxiety a few months in and the combination of fights over the Libre and the continued anxiety because you can keep checking was actually harmful for us at that point in our family’s diabetes journey. You and he are in this for the long haul. Tech is amazing but not if it’s contributing to stress and anxiety. Please chat with your team about it all.

 

[Asherly]

I will.
Dexcom were happy for us to have a break whilst he was making ketones and had a cold. They also told us it can not be covered with a bandage or plaster but sent us some patches to stick on top but these stick so well and for how regular they have to be peeled off he got sore very quickly. His Bum needs a break hence using his other arm.
Dexcom is like a security blanket for me now. It’d break me I recon if someone took it away and we had to go back to finger pricking and not knowing..... sorry I’m cringing for those reading this that don’t have access and Im sounding like I’m above finger pricking. I know I’m not. He had an interesting low to high to Low a couple of nights ago that other than dreaming I’m not sure why it happenned. I’d never rest not that I do much now. He / we hated going back to finger pricking whilst he was making ketones and had to check him more- it’s not something I want to get him ‘used to’ again........I really hate that term for the record.
He runs above 14 a lot and this burns the sensors out quickly. Also the bottles of milk send him high plus giving insulin after eating doesn’t help and his graph is very roller coaster another thing that burns out sensors.
Jamies team are reviewing his data tomorrow and so I expect a call from them after they have looked over his readings especially as now I am able to enter carbs and insulin given. I wasn’t told about that to start with and soJamie’s first lot of data wasn’t very helpful to make adjustments.
Will keep you posted but thanks for keeping batting back to me. I really can’t listen to another person trying to be sympathetic or better yet telling me Jamie will grow out of it. Or it might develop to type 2 and he could have pills....... I’ve had some proper stupid comments made by people I never expected these last few weeks it was time I reached out and asked some advice from people who know and live it not think they know.

 

[Pumper_Sue]

Dexcom were happy for us to have a break whilst he was making ketones and had a cold. They also told us it can not be covered with a bandage or plaster but sent us some patches to stick on top but these stick so well and for how regular they have to be peeled off he got sore very quickly. His Bum needs a break hence using his other arm.

He has two side of his bum so alternate the sides the patches are fab just use a medical adhesive remover to take the stick out of the patch before removal or some baby oil.

He runs above 14 a lot and this burns the sensors out quickly. Also the bottles of milk send him high plus giving insulin after eating doesn’t help and his graph is very roller coaster another thing that burns out sensors.

I have no idea where you got this info from as it's not true. Yes the Dex does not like high numbers hence accuracy is not great but it does not burn out the sensors. Just do a finger stick and recalibrate the sensor.
I sincerely hope you are not using the dex readings to calculate his meal boluses. My personal findings are it's not reliable enough.

At his age why are you giving him bottles of milk? Simple solution is give him milk with a meal and that it. Sugar free squash is fine or water at all other times.

 

[Asherly]

He has two side of his bum so alternate the sides the patches are fab just use a medical adhesive remover to take the stick out of the patch before removal or some baby oil.


I have no idea where you got this info from as it's not true. Yes the Dex does not like high numbers hence accuracy is not great but it does not burn out the sensors. Just do a finger stick and recalibrate the sensor.
I sincerely hope you are not using the dex readings to calculate his meal boluses. My personal findings are it's not reliable enough.

At his age why are you giving him bottles of milk? Simple solution is give him milk with a meal and that it. Sugar free squash is fine or water at all other times.

Hey....the milk is because he was 8 weeks premature weighing 3lb and we were advised at his last clinic to give milk , milkshake anything with calories over juice or water as he is on the dinky side still - eat the donuts add extra butter in mashed potatoes and get some meat on him - their reason so if he got poorly he had some reserves and that was in January from the special care team. I didn’t want to as it felt like we were going backwards but Jamie enjoyed the milk and gained weight. Obviously had he still just been drinking juice as he was some of the issues now wouldn’t be. On the other hand I’m glad we were told to do this so when he developed type 1 he had a little reserve whilst he sat in DKA on my sofa waiting for antibiotics to work.......
This certainly is not what I imagined for sure - my 3 year old to still be in nappies and demanding bottles screaming like you wouldn’t believe. If I was strong I’d remove the bottles but I’m not I’m still feeling pretty sorry about the whole situation for us all and so it is silly for me to say yeah il just take it away when I know il give in to the screaming. Plus it’s extra calories and il take them however they go in at the moment......
I have for def been told by both Dexcom tech support and my team that the sensors ‘burn out‘ (Their term) if the user runs high or seesaws.
I need to get a grip.

 

[grovesy]

Who ever told you it might turn into Type 2 is an idiot!

 

[Pumper_Sue]

I have for def been told by both Dexcom tech support and my team that the sensors ‘burn out‘ (Their term) if the user runs high or seesaws.

If this is the case then they are not fit for purpose and as it appears you have no control over your lads blood sugars there is no point in putting him through all the stress by using them on him.

On the other hand I’m glad we were told to do this so when he developed type 1 he had a little reserve whilst he sat in DKA on my sofa waiting for antibiotics to work.......

Antibiotics do not fix DKA. Fluids and insulin are the cure.
Jamie will loose weight if his blood sugars are running high all the time and end up in DKA again.

You and only you can sort out his diet so he eats properly feeding him full of cr*p and which includes milk shakes and donuts are not a healthy diet for anyone and I'm more than sure no HCP told you to do that.

 

[Asherly]

If this is the case then they are not fit for purpose and as it appears you have no control over your lads blood sugars there is no point in putting him through all the stress by using them on him.

Antibiotics do not fix DKA. Fluids and insulin are the cure.
Jamie will loose weight if his blood sugars are running high all the time and end up in DKA again.

You and only you can sort out his diet so he eats properly feeding him full of cr*p and which includes milk shakes and donuts are not a healthy diet for anyone and I'm more than sure no HCP told you to do that.

I am here for help. Why would I lie? I’ve spoken to the diabetic team and our dietician has heard of it and was not surprised. He became poorly during Covid and so I did not have access to a GP face to face and so he was prescribed antibiotics until I took him to hospital. The doctor even called when we were discharged to say how shocked he was and in his 20 years had not encountered it in a 2 year old. So the extra weight he had put on at the advice of the premature team helped. Ok I’m leaving I didn’t come on here for this. I shouldn’t have to justify what medical professionals have told me this is hard enough without feeling the need to defend myself

 

[Thebearcametoo]

I hope the team are helpful once they have reviewed the data.

I think the key for you is finding ways to balance your need to know what’s going on with his numbers and him being able to deal with whatever mode of glucose monitoring works and you need to get the insulin into him to balance whatever he’s eating. Milk is fine. But you must bolus for it. He can have carb free foods but a lot of protein and fat without carbs will cause him to spike too.

I suspect things will just take time to work easily for your family (it took a while for us). What support do you have from other family members? It’s a lot to take on caring for a small child with addition needs (which is why we get DLA) and the first year is a huge adjustment process with lots of ups and downs. We had extra support as a family both through our team’s psychologist and working with a private holistic therapist doing meditation and yoga stuff that was really helpful emotionally for all of us.

You are going through a difficult process at a really difficult time. Lean on your team. Try to take what everyone else says (including on here) with a pinch of salt. We only get a small picture of your life from your posts and can’t always put that into a wider context and none of us are living your life.

 

[Docb]

@Asherly, hope you do come back and read @Thebearcametoo 's comments.

The details are not for this forum but I have personal experience from which I can relate to you to experience you are going through. Lots going on, everybody "knowing" what you need to do but none of them actually having the responsibility of dealing with it. At the end of the day, when they have all gone home or turned their computers off, it's you who is faced with trying to assimilate all the information and then having to deal with the problem. The frustration you feel can only be understood by anybody who has been in a similar position.

First off, I am absolutely sure @Pumper_Sue was not being critical of you. She just is not like that. She is quite right that you do not treat DKA with antibiotics and if some professional has left you with that impression then it is the professional that needs sorting out, not you.

Second, do as @Thebearcametoo says lean on your team. Amongst all those you come across, they are the ones most likely to have to the experience and the contacts to get you the help you need. You could also try calling the DiabetesUK help line.

Finally, the best healer in this sort of thing is time. The problems you are going through are in the short term. Hang in there and things will sort themselves out. A tough thing to get your head round but its what my experiences have told me.

 

[SB2015]

Hi @Asherly

You are dealing with very difficult circumstances and advice from any source can be confusing and contradictory. @Thebearcametoo has outlined some very useful advice as well as an awareness of the wider issues around managing a child with T1.

Keep in touch with your team and make sure that you talk to them about your feelings as well as how your son is coping. They are there for you both.

 

[Bronco Billy]

Hi @Asherly You certainly are going through it!

Your son’s behaviour could be a result of a mixture of the circumstances. His diagnosis, lockdown and yo-yoing blood sugar levels making him feel rotten. I always know when my daughter’s levels are high as her behaviour changes, and she’s had T1 for 11 years. Your son is probably still adapting to his diagnosis and some children to struggle to adjust.

You made a very valid point about the dexcom and finger pricking. I understand why he doesn’t like having it inserted, so have you tried selling it to him on the basis of the number of finger pricks he doesn’t have to have because he has the dexcom? It might help him feel better about it. Will he drink no added sugar squash instead of milk? He can drink this to his heart’s content and it won’t send him high. Before giving him his injections, you could try numbing the injection site with something like a sugar free ice-pop and give it to him after the injection.

It is a fair point to say that it is important that then weight that was lost before diagnosis needs to be put back on. Have you spoken to the dietician recently? What did she say? There is a balance to be struck between his diet and a healthy development. As parents, we have to juggle these things.

Please don’t be harsh on yourself. You are dealing with a lot, not least the changes in your life caused by the diagnosis. You are doing a great job, even if it doesn’t feel like it.