Behaviour

[Asherly]

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

 

[Sally71]

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.

 

[trophywench]

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?

 

[Asherly]

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.

 

[Asherly]

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.

 

[Deleted member 27171]

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?

 

[Asherly]

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.

 

[Thebearcametoo]

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.

 

[Deleted member 27171]

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.

 

[grovesy]

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

 

[SB2015]

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

 

[Pumper_Sue]

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)))))))))))))

 

[Thebearcametoo]

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)

 

[Pumper_Sue]

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.

 

[Asherly]

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.

 

[Asherly]

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....

 

[Pumper_Sue]

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.

 

[Thebearcametoo]

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.

 

[everydayupsanddowns]

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.

 

[Asherly]

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