# Behaviour



## Asherly (Sep 18, 2020)

I am wondering if anyone can share with me how my 3 year old might be feeling? He was diagnosed in May and turned 3 in July. His behaviour is awful and I was wondering how much could be linked to him having very up and down levels vs just being 3in general. He has a Dexcom that lasts if we are lucky 3 days that always upsets him having it taken off and inserted and he still does not reach the minimum requirements for a t slim pump so is having multiple injections. Just a really angry little man I can’t help but think his blood levels are having a bigger impact than I can imagine. How does it feel going high to low to high to low? I hope that makes sense? Any parents notice a big difference after diagnosis? Thanks as always


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## Sally71 (Sep 18, 2020)

I think blood sugars at either extreme feels really rough, and bouncing between them probably feels worse.  He's probably also rebelling against the needles, and at such a young age it must be hard for him to understand why you have to do all this to him.  Maybe he's also starting to realise that it isn’t going to go away.  Have you tried distractions or rewards for getting Dexcoms and needles done without fuss?  When my daughter had only been diagnosed 3 months we had a pump cannula which didn’t insert properly and I had to inflict pain to get it off again, she was then terrified of cannula changes and we had to chase her around the house to get them done and there were lots of tears (hers and ours!), we tried reasoning with her, bribery, getting angry etc etc but noting worked.  Then eventually after about four months it just suddenly dawned on her that the whole procedure would be a lot less stressful if she just let us get it over and done with quickly, and then she discovered that it didn’t actually hurt so much after all, and things got much better after that. Hopefully your son will eventually learn to just get on with it too, it's still quite early days for him.


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## trophywench (Sep 19, 2020)

See-sawing makes me feel utterly crap - and I understand what's happening, but usually when that has happened, I don't know why it's happened and at times that has really sunk me low, mentally.

Have you rung your hospital team and told them about it?


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## Asherly (Sep 19, 2020)

Hi thanks for responding. Yes I have spoken to his team and do quite regularly. They think he is switched on and playing me..... We have been learning about Ketones for the last week so fun fun times. I think you commented on an early post about the incident with the canular fault. I know I am hurting Jamie everytine I insert a sensor and also taking them off he isn’t very happy with either. They last longer on the back of his arm  approx 4 days but this site causes the most distress. I have bought the kid so many things to try and distract him but finding that I just have to do it to avoid the build up to it and just cope with the tears afterwards. It is just relentless. Jamie isn’t helping the situation with his ever swinging bloods as he refuses to eat and just wants bottles of milk associating needles with food. Or pigs out far more than I’ve injected insulin for and we have to correct. I’m gutted. Really really gutted. I baby led weaned him and he has been helping himself to stuff out of our cupboards forever! There is just no understanding or co operation from him and his moods are terrible. He is being horrid to his sister and I am struggling to work out of it is just because he has been on the gluco coaster or if he is just a twerp but she is also regularly in tears too now because he has been horrid and I need to keep her safe too (she is 8 and worried she will get diabetes too) I’m still working through whatever this process is but I picked myself up better after my Dad died. Jamie still begs not to be injected - he says ‘don’t get me Mum’ and I now ask ‘why do I have to get you?’ And he replies with ‘got type 1 diabetes’ which although these words hurt me too it is better than what I was doing which was just apologising, doing it and then hiding and crying.
Can anyone remember when some
Sort of co operation started from an early diagnosis? I am wishing these next few years away. One very sad Mummy trying to adjust to another new normal.


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## Asherly (Sep 19, 2020)

Maybe co operation isn’t the correct word... awareness maybe? Just being able to say Mum I don’t feel right would be ace right now...... sorry I’m coming across so miserable. I understand when he is bigger that this will be easier but that just seems so so so far away at the moment.


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## Deleted member 27171 (Sep 19, 2020)

Have your team offered any psychology support for Jamie? I remember being offered it when my son was diagnosed but he wasn’t even talking at the time so we declined - but it was offered so I imagine must be beneficial?


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## Asherly (Sep 19, 2020)

Yes we have been offered to talk to someone but I think I’m where you were....I’m not sure how much he would get out of it as he is so young the understanding isn’t there. Likewise I’ve been reading some threads on here and I hope we avoid the ‘I don’t want this anymore ‘ when he is bigger because he won’t know a life without T1. Currently waiting to see if Dexcom will stop erroring. Another 8 minutes and then it will have been 3 hours and il have to change it. We did this yesterday morning too. Another thing that when he is bigger for the device and older to understand not to bump it it will last closer to its 10days. I hate removing it and fitting it but rely on it now even if it’s not 100%. For info Dexcom are happy with how many sensors he is burning through and continue to send replacements.


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## Thebearcametoo (Sep 19, 2020)

The whole process sounds very distressing for you.

I think kids that age are in the peak of defiance and default to ‘no’ even without a chronic condition. I think sensors are great IF they work. I’m not sure right now you’re getting any benefit from it and it may be easier to just go back to finger pricks (nothing is easy though). We went through a trial of Libre but the putting on and taking off of sensors was such a battle that we went back to finger pricks and she found that so much less annoying that she accepted them whereas before that it had been a battle.

How active is he? At that age both of mine needed a lot of running around, climbing, swinging and generally moving around. It’s exhausting for you but putting effort into giving him whole body feedback may help him deal with having to be still for injections etc and just being tired enough to not want to put any effort into arguing.

It’s worth talking to the psychologist even if you think he won’t get anything out of it you might. And they may have some play strategies to help. I think you also need some ways fo completing the stress cycle. Having your child wailing at you and having to do medically necessary things is really difficult. His emotions will move on faster than yours do and you need to be able to keep yourself together through all of this.

FWIW we found the 3-6 months post diagnosis the hardest with behaviour and she was 9 then.


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## Deleted member 27171 (Sep 19, 2020)

That’s good to hear about Dexcom - my son is much older and so we don’t have the problem with knocking them so much, but he always wears them on his arm and when doing anything that might risk it getting knocked, like football, he wears a small section of tubigrip over his arm which protects it well.

I don’t remember exactly when he was able to better articulate how he was feeling, but know he was definitely able to say he felt hypo when he started school as we encouraged him to say this so teachers understood - as an August baby he was only just 4 at that point. Highs just became obvious, aside from the weeing and thirst his behaviour stood out (still does a bit) and he would just be ‘difficult’ about everything, sort of deliberately obstructive, and not just in relation to diabetes stuff.

I remember someone I met once with type 1 herself discussing her experience as a small child and how difficult it is knowing whether to discipline when diabetes is causing the behaviour and her explanation was hypos definitely not as you cant control behaviour it is not a choice to behave how you do when hypo - but that behaviour when high was more like PMT in that your mood is definitely affected but you do have control over how you react to people, but just have less tolerance. It helped me understand the difference a bit better.


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## grovesy (Sep 19, 2020)

I have just had a thought I know they have them as inpatients,would a play therapist be of any help?


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## SB2015 (Sep 19, 2020)

I wonder whether it might be worth taking up their offer of support from the psychologist.  They will be  experienced in helping children of all ages and will address things in a way that suits his current development.  That will change as he gets older and it may be that more support will be needed later.

Another thought having just read through this thread, could you involve your son in removing the sensor.  I always rip mine off rather than letting anyone else do it.  It somehow is easier.

I am not a parent and not used to dealing with children of this age, but I hope that some of the ideas from others above help


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## Pumper_Sue (Sep 19, 2020)

Asherly said:


> Hi thanks for responding. Yes I have spoken to his team and do quite regularly. They think he is switched on and playing me.


That shows a complete lack of insight imho.
If your little lad is having a yoyo effect with his blood sugars then yes his mood/behaviour would be very challenging. I can remember swearing black was white when running high and no one could convince me otherwise. Bloody minded spiteful little wotsit  springs to mind with major problems trying to be nice.
 I was diagnosed aged 4 1/2 so can relate as to how your lad feels.
As to the food issues simple solution is move it out of his reach and just leave sugar free jelly or cheese/ham ie carb free if he is hungry. Decide what you are having at meal times work out the carb value and stick to it. If you know he is going to be a complete pain in the article by not eating the whole meal then even though his numbers will go up a bit just inject him after the meal.
There's more than one way to skin a cat so the saying goes. 

Dexcom put it on top of his bum it's out of the way he can't reach it  or knock it so easily there.

Injections you can get some magic cream which numbs the area ( I can't remember the name of it) Can be bought in the chemist shop.

It sounds to me as if both your daughter need a group hug (((((((((((((((hugs)))))))))))))


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## Thebearcametoo (Sep 19, 2020)

The problem with the cream is it takes 10-15 minutes to work so it just extends the whole rigmarole. We tried that, freeze spray, ice, all sorts of things. It just made for another step to fight over. (All kids are different obviously so it can be worth a try but that was our experience)


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## Pumper_Sue (Sep 19, 2020)

I also wonder if it would be better for the little chap to have a mixed insulin for the time being and use a bolus insulin for when needed (highs) This would cut down on the injections and hopefully halve the stress involved for everyone.


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## Asherly (Sep 19, 2020)

Wow, thanks so much for all of the suggestions. I’m not sure where to start.
Food: we are letting Jamie eat and then injecting as we have been caught out too many times and had to chase lows. But he grazes and as he hasn’t been eating I’ve been pretty soft and will not let him go hungry so just accommodate when he does show an interest in food. He can’t just get stuff out of the cupboards anymore. He will eat carb free foods but I’m pretty soft and have enough tantrums to cope with I’m trying not to let food become another one. It helps if Jamie eats a few more carbs because the minimum limit for the pump is 8.5ml per 24 hours if I remember rightly and he was sitting around 5ml. He has tresiba plus novi rapid and I’m certain the pump will help get better control of his levels and I hoping help control his emotions. His Dexcom failed on his arm after 24 hours so I have inserted it back onto his bum again quite oddly at Jamie’s request. He really cried having the sensor on his arm so maybe he realises his bum is better for insertion?  Either way a better experience today for a sensor insertion and even if it’s one every ten for now I need to be pleased with that. 
Also he can’t pick it on his bum. I bet when he is old enough to understand and peel them off he will do it but for now we have to tell him not to touch his button or scratch it etc.


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## Asherly (Sep 20, 2020)

trophywench said:


> See-sawing makes me feel utterly crap - and I understand what's happening, but usually when that has happened, I don't know why it's happened and at times that has really sunk me low, mentally.
> 
> Have you rung your hospital team and told them about it?


It’s interesting you have written this as we are shocked that the same thing one day to another can give such different results. Dexcom has been great to help us see. I suppose I chew on the mental side whilst Jamie is coping with the feeling of it....


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## Pumper_Sue (Sep 20, 2020)

I was bout 5 years old when I could tell my Mum I was hypo. Not using those words though.

Mum little brother and I were out shopping and I kept telling mum I was funny in the head  It took mum a few minutes to work out what I meant, plenty of praise followed and I can still remember to this day my first hypo treatment after telling mum. It was a Devon cream toffee from Woolworth's pick and mix.
Your little lad knows he doesn't feel right but has no way of expressing this to you as he is so young. So all you can do is watch for the signs and treat as you go along.

There is a product called skinTac which you can apply to the Dexcom tape which will give it extra stick. You can order it on line and make sure you ask for the VAT to be removed as for medical use.

If you know little lad is hypo have a treat tin/tub handy and give him the choice of which sweets he has. As you know he is hypo do not test his blood sugar as a waste of a test strip and saves the stress as well.

Upset with the injections has it been suggested to try different needles just in case the ones you have are causing a problem? Some people react to certain brands of needle so just a thought.


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## Thebearcametoo (Sep 20, 2020)

Can I make a suggestion about food. We did babyled weaning and I know that eating to fit insulin is a long way from that but it’s unsustainable continue grazing. Can you move more to offering monkey plattersor a menu of choices at meal/snack time so he can choose and assert control over what he eats and how much but you offer food only at those times and remove food for the rest of the times. He can still have ice cream for breakfast if he wants but to get him away from grazing. If you can offer low carb or carb free snacks at snack time then you could do it without insulin and correct at meals. If you can get into a cycle where he has meals every 4 hours (ish) then it allows the insulin to complete a full cycle and means you only need to bolus for meals which is fewer injections.

We have no foods off limit but some foods like sweets need to always be with a meal so that it helps slow down the spikes.


*if you’re not familiar with monkey platters they’re a plate or tray of grazing foods but all at one meal. Often a mix of sweet and savoury but finger foods which can be eaten whilst playing or watching tv without effort.


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## everydayupsanddowns (Sep 20, 2020)

Sorry to hear about the challenges you and your litlun are going through. 

Hoping you find a way through the maze that suits you both.

You are doing brilliantly. Keep plugging away.


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## Asherly (Sep 21, 2020)

Hey all,

Another day at the office. Dexcom has failed in a new way today and the patch stayed stuck but Jamie has obviously caught it or something as half of the holder was hanging off....I ended the session. So it lasted yesterday morning until this evening. I’ve put it onto his arm and he has sobbed to sleep. I really don’t think I could cope not having Dexcom now but I really hate seeing Jamie so upset. 
Monkey platters sound like our dinosaur food... ham, cheese, sausages, crackers,nuts, we just let him choose and he makes little mixtures to nibble xx


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## Pumper_Sue (Sep 21, 2020)

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.


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## Thebearcametoo (Sep 21, 2020)

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.


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## Thebearcametoo (Sep 21, 2020)

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.


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## Asherly (Sep 21, 2020)

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.


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## Pumper_Sue (Sep 21, 2020)

Asherly said:


> 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.



Asherly said:


> 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.


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## Asherly (Sep 22, 2020)

Pumper_Sue said:


> 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.
> ...


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.


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## grovesy (Sep 22, 2020)

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


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## Pumper_Sue (Sep 22, 2020)

Asherly said:


> 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.


Asherly said:


> 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.


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## Asherly (Sep 22, 2020)

Pumper_Sue said:


> 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.
> ...


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


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## Thebearcametoo (Sep 22, 2020)

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.


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## Docb (Sep 22, 2020)

@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.


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## SB2015 (Sep 22, 2020)

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.


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## Bronco Billy (Sep 22, 2020)

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.


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