Recently diagnosed child suddenly refusing insulin

[sammeyrach89]

Hi guys me again so my LO (6) was diagnosed 7 weeks ago. We had issues at first with the jobs as hospital admision was traumatic due to bad DKA however week and a half out of hospital he was self injecting with guidance. However these last few weeks we are back to fighting in and point blank refusal especially at night time when we do buttocks but generally all injections is now a battle... is this normal and how would you suggest we deal with it. Dad works funny hours so 99% of the time I'm on my own trying to keep him still and calm and then inject . TIA XX

 

[trophywench]

He's not on Lantus at night is he? If not, which?

 

[Sally71]

Unfortunately realisation might be setting in that this isn’t just a temporary situation and he doesn’t want it - but of course not giving him the insulin isn’t an option so it’s a horrible situation to be in! Is it injections in the buttocks which particularly upset him? Could you do them somewhere else instead? My daughter has always flat out refused anything going near her buttocks! Trophywench has a good point too, I believe Lantus can sting a bit when it’s injected, in which case ask your medical team if you could switch to a different long acting insulin.

We had an issue 3 months in with a cannula which didn’t insert properly and I had to inflict pain in order to remove it, with the result that daughter was then terrified of cannula changes and we had to chase her round the house to get them done, and there were many tears (ours as well as hers!). We tried everything, reasoning, being stern, bribery etc etc but eventually after about 4 months she suddenly realised that the whole procedure would be much less stressful if she just let us get it over and done with, and then discovered that because she was less tense it hardly hurt at all anyway, and we’ve never looked back. I feel for you and hope you can find a solution soon!

 

[ky333]

Have you tried the 'tickle flex' ?
My daughter is 8 and she was fine for about 3 weeks, after this she didnt want to do it anymore. The cards and presents had stopped and reality kicked in. It was no longer a novelty. The tickle flex just takes away the pain of the actual injection. Worth a try at something new??

 

[SB2015]

Hi @sammeyrach89 , sorry to hear the difficulties you are experiencing.

Buttocks can be very sensitive, I know I find that for cannulas, and avoid that area. For me flabby bits at lower back or around the abdomen and sides are better. Well worth talking about other sites. Then perhaps give him the option of choosing where it goes each time whether he is self injecting or you are doing it for him. I know it is a choice he does not want to have to make but at least he is then involved in the decision making.

It is also worth talking with you team about an alternative basal insulin. Some people react to different ones, and a change can make all the difference.

 

[Lilian]

Can you find somewhere where she can meet other children with diabetes round about her age and a bit older. It might help her by hearing that other children have injections too.

 

[everydayupsanddowns]

So sorry to hear you are going through this @sammeyrach89

Must be very upsetting and distressing for both of you.

Are you able to have a conversation about what the concern is? is it pain or discomfort, or just not wanting to need it?

The lack of control, and the fact that there is no option can be very difficult to come to terms with.

Hope you find a way to make the jabs much less of an ordeal.

 

[Pumper_Sue]

Hi guys me again so my LO (6) was diagnosed 7 weeks ago. We had issues at first with the jobs as hospital admision was traumatic due to bad DKA however week and a half out of hospital he was self injecting with guidance. However these last few weeks we are back to fighting in and point blank refusal especially at night time when we do buttocks but generally all injections is now a battle... is this normal and how would you suggest we deal with it. Dad works funny hours so 99% of the time I'm on my own trying to keep him still and calm and then inject . TIA XX

Hello Sammy,
wow at 6 doing his own injections that is ace but can understand why he is now rebelling.

Just a suggestion but go right back to basics and treat your little soldier as if he is a lot younger. Like you he is probably overwhelmed by everything. So a giant step back would be the order of the day.

Can you ask the team for a spare pen (defunct) so your little man gets to inject you first then you do him.

Also a bit of subtle questioning might be in order and find out if the injection is stinging or the needle hurts when it goes in. Some needles are cheap and nasty and cause a few problems. If this is the case I wonder if your son knows how to explain this to you?

 

[Thebearcametoo]

We had a fairly easy first 2-3 months and then the reality that it wasn’t going away really hit and we had a really difficult few weeks (she was almost 9 when she was diagnosed)

some things that helped us:

She did her own injections from the beginning and hated having the basal in her bum as she couldn’t control it so basal went in her thigh instead
Trying to do basal at night when she was tired was one thing too many so we switched it to the morning (with the help of the team to move it backwards through the day)
We also changed from lantus to Tresiba as she said it stung less (and the tresiba lived in the fridge as she said that also stung less). I don’t know how much was just about having some control and making choices and how much was actually better but it seemed to placate her.
She saw the team psychologist and we also paid for some well-being sessions with a local ex-teacher who does wellness stuff with kids that included yoga, meditation, and generally talking about feelings (this may be something school could help with)

It is a phase and it will pass but it is still hard work and upsetting for both you and him. A lot of patience and love, validate the feelings but don’t dwell on them with him. Get some support for you too (your team psychologist should be available to you as well as him).

 

[DaveB]

Hi. I feel for you. I use Levemir Basal which doesn't sting and is very popular. I have heard Lantus can sting but I have never used it. May be worth looking at the needle brand. I used to use BD Microfine which are high quality but my surgery changed to GlucoRX which are cheaper. They are generally OK but the needles vary a bit. I assume the needle length is the shortest they make which I think is 4mm?

 

[trophywench]

@DaveB - I'm allergic to (presumably the lubricant BD use on) their needles - they sting like heck!

 

[mikeyB]

The only needles I use are MyLife Clickfine. They simply push on to any pen, though still have to be unscrewed. Their USP is that they are ultra fine, and have what they call a diamond tip. They are so comfortable to use - I can't feel them going in, and occasionally have to look to check they are in.

Needless to say, they are expensive - twice the cost of the rubbish needles prescriptible by NHS England, though I did get them on prescription in Scotland. They cost around £25 per 100 to buy, but I refuse to use any other needle. They are far and away the best on the market.

 

[sammeyrach89]

He's not on Lantus at night is he? If not, which?

Hi jenny apologies for the delayed response. Yes he has lantis at night . Novo rapid in the dayx

 

[sammeyrach89]

Unfortunately realisation might be setting in that this isn’t just a temporary situation and he doesn’t want it - but of course not giving him the insulin isn’t an option so it’s a horrible situation to be in! Is it injections in the buttocks which particularly upset him? Could you do them somewhere else instead? My daughter has always flat out refused anything going near her buttocks! Trophywench has a good point too, I believe Lantus can sting a bit when it’s injected, in which case ask your medical team if you could switch to a different long acting insulin.

We had an issue 3 months in with a cannula which didn’t insert properly and I had to inflict pain in order to remove it, with the result that daughter was then terrified of cannula changes and we had to chase her round the house to get them done, and there were many tears (ours as well as hers!). We tried everything, reasoning, being stern, bribery etc etc but eventually after about 4 months she suddenly realised that the whole procedure would be much less stressful if she just let us get it over and done with, and then discovered that because she was less tense it hardly hurt at all anyway, and we’ve never looked back. I feel for you and hope you can find a solution soon!

Hi Sally yes night time was in buttocks and yes it is lantis. We now do stomach which is better but we still have the pre meltdown- pre emptive kick off tension etc-The situation you have described is exactly like mine minus the cannula . What you said about the realisation kicking in is Ctually something the school said so could just be a case of riding the wave. Thanks xxx I'm glad uts all settled down for you and LO now though xxx

 

[sammeyrach89]

Have you tried the 'tickle flex' ?
My daughter is 8 and she was fine for about 3 weeks, after this she didnt want to do it anymore. The cards and presents had stopped and reality kicked in. It was no longer a novelty. The tickle flex just takes away the pain of the actual injection. Worth a try at something new??

Iv never heard of this please tell me more please xxx

 

[sammeyrach89]

Can you find somewhere where she can meet other children with diabetes round about her age and a bit older. It might help her by hearing that other children have injections too.

Iv tried asking the team and apparently the local groups in our area are for adults not kids. Iv kept his diagnosis within the close family only but might have to reach out locally. When he was diagnosed his school had to be trained fully before he could go back so there's not another child in his school that has it xx

 

[trophywench]

I asked because Lantus really stings some people - and he might be one of them. That's exactly what I was on at one time too - and the Novorapid jabs didn't sting - the Lantus needle going in didn't hurt unless I hadn't sucked up the airshot enough (cos I started very gently resting the pointed end of the needle against a piece of kitchen roll when I was trying to find out what actually stung) but it started to hurt the very second I started to depress the plunger.

Or of course, could be what Sally suggested!

 

[rebrascora]

I hadn't heard it mentioned before on the forum or elsewhere either but Googled it and it looks quite innovative. Didn't look at the price tag but imagine it is expensive for what it is.

 

[sammeyrach89]

Hello Sammy,
wow at 6 doing his own injections that is ace but can understand why he is now rebelling.

Just a suggestion but go right back to basics and treat your little soldier as if he is a lot younger. Like you he is probably overwhelmed by everything. So a giant step back would be the order of the day.

Can you ask the team for a spare pen (defunct) so your little man gets to inject you first then you do him.

Also a bit of subtle questioning might be in order and find out if the injection is stinging or the needle hurts when it goes in. Some needles are cheap and nasty and cause a few problems. If this is the case I wonder if your son knows how to explain this to you?

We have a sparebpen so dad actually gets injected at night first at the moment but we are still rebelling once it is done he is absolutely fine so painfull.. I think not now we are in his stomach. Needles are VERY cheap and nasty we were spoiled when he was discharged from hospital because we were sent home with a job lot of hospital neededles and since getting them on prescription you can most definitely tell the difference x

 

[trophywench]

Does @Odette DUK want to explain the things DUK arrange whenever they are able to, again?