Our 5y old son refuses the injections

[Adrisr]

Good night,
Our 5y old son has been diagnosed with type1 diabetes three months ago. After the initial shock the following weeks have actually been ok, our son getting used to it and us (his parents) finding new daily organisation.
Unfortunately over the last two weeks things worsened and progressively our son showed more and more reluctance for the injections. He loves eating but now prefers not to eat if we tell him this will require an injection. The last few days every injection has become a battle it can take over 30 mins to be able to do it and sometimes doesn’t let us do it at all. Tonight I went for a check as he was sleeping and noticed he was high. I tried to make an injection but he woke up and categorically refused. I came back desperately one hour later while he was sleeping and tried again but he wake up as I was doing it and almost broke the needle. The situation has become unsustainable.
We talk to him a lot to understand what has changed and worries him now but he doesn’t speak much. Sometimes he says it hurts him but we are always very cautious and haven’t changed how we do it from the first two months.
Has anyone faced similar situation ? Any advice that could help us?

Thank you very much

 

[Mike d]

You really must seize control if a life is on the line ...

 

[EllieM]

What a difficult situation, I really feel for you and your child.

(Luckily I didn't get diabetes till I was 8, and as I had a T1 mother I was familiar with the idea that injections were a normal part of life. Although my hospital had me doing my own injections from day 1, I do remember having a period of extreme difficulty/injection refusal a few months after diagnosis, where I didn't feel that I could cope any more, and my mother took over injections for a while.)

Interesting article here
https://kidshealth.org/en/parents/injections-tests.html

Can you talk to someone at your clinic about this? Injections aren't negotiable, they have to happen.

Good luck.

 

[Geordie_P]

I'm sorry to hear about this: I also have two little sons, and I can easily imagine them being the same way: I've had to take my youngest to the emergency room for skull X-rays and stitches, and that went ok because he didn't have time to 'get used to it', but I think it's when it becomes a regular thing they start to resent it. I did used to have to take them to a TB clinic for regular testing and xrays, and while that wasn't anything like as severe as your issues, they had to get a painful test injection in their forearms which would create a boil which would get measured on the return trip, so it was a horrible sort of procedure for them. What I used to do was there is a park with a funny pebble floor they used to like to run on, next to the clinic, so I would walk them to the clinic through the park, and tell them they couldn't play yet, but they could play on the way back. Just misdirection really, a distraction, but it worked. If I'd tried to explain how dangerous it was that they'd been seriously exposed to TB and their tests kept coming back as inconclusive, it might have just added to the overall fear or resentment. I definitely agree with Mike above that you *have* to take control if it comes to that, and I don't think you should be afraid of just forcing him in the event of an emergency, but it would be nice if, long-term, the situation could de-escalate.Is there anything you could tie injections to as like a positive distraction- like he has his evening injection then watches 'Adventure Time' or some other favourite show? Another option that would probably work with my kids would be to let him play on your phone when it's injection time.
Honestly, I don't know and I don't know what it's like being a T1 parent, but possibly something along the lines of those distraction techniques might help. Good luck to you!

 

[Dark Horse]

@EllieM has given a useful link. I've no experience of this but may help:- http://www.buzzy4shots.co.uk/

 

[kev-w]

What size needles are you using? They make 4mm long ones which are pretty painless (tho it maybe doesn't appear that way to your little un) kiddies stickers on the pens perhaps to distract from their purpose, failing that try bribery?

There's a 'parents' section on this site so you could post the question there too, but good luck to your little one.

Edit, a root around on the web shows some cartoons about T1 aimed at kids on youtube, I've not watched any but you could look there and see if anything may 'help', and remember the 'basal' injection is important!

 

[rubypops]

Good morning.
I was diagnosed aged 1 and have memories of running around the kitchen table screaming when it was injection time! Must be a nightmare for any parent. Well done for your strength and perseverance.

Have you thought about trying a reward chart? Every time he allows you to do his insulin, he gets to put a sticker on the chart or colour a square green. If he has lots of green squares or stickers at the end of every week (or day) he can have a treat.

I have a lot of different versions of these reward charts with dinosaurs / cars / superheros, etc (I'm a teacher!) so send me a private message if you'd like some.

 

[rubypops]

Also check out Jerry the Bear
https://www.jerrythebear.com/

There's a few different Jerry the Bear's out there if you do a google search for diabetic teddy bears!!

https://www.buildabear.co.uk/online-exclusive-diabetes-kit/425462.html

 

[Jaylee]

Hi @Adrisr ,

Welcome to the forum.

Back in my day I was practicing on an orange.

Do you have a spare pen?
This could be used by your son on his favourite toy as a way of understanding what needs to be done to stay healthy.
Then later on, under supervision he could take control of his own real injections.

I've also heard of a product called "Tickleflex" which fits over the sharp end of the pen to help take the stress out of injections for younglings.

Hope this helps.

 

[EddieA12]

Hi. This really takes me back. I was 5 when I was diagnosed (I’m 39 now!) I remember having to mix the insulin in a syringe and they needle was a lot bigger! I think the teddy idea is a great one. I remember I would do anything for a toy, so maybe some kind of point system would help. Every time he has an injection he gets a point and points make prizes!
I take it you are changing the needles and checking the injection site. I seem to recall it make a difference when I could do it myself, then I could control it if it started to hurt when I injected, I would take the needle out and put it somewhere else. Could he practice on his teddy with the idea of him doing it himself?

 

[Adrisr]

First of all it’s the first time I am posting a question and I am amazed by the number of feedbacks I have already got. It feels good to be listened to and I am very thankful to all of you for that.
To come back on a few questions:
Yes we use 4mm needles et we systematically change sites. We have already tried smartphone/tv... but surprisingly so far it hasn’t worked. It might be sometimes painful for him but we think it’s mostly psychological.
We know injections are necessary but it’s very difficult to use our force to make his injections, I fear it will be traumatising.
So far support from the hospital has been disappointing, justified by the covid situation and lack of staff...we suspect an insuline allergy but it takes months to get an appointment.
We will try some of your advice, ladybird, bear, ice, sticker rewards...hopefully something will work
Thanks again

 

[Jaylee]

First of all it’s the first time I am posting a question and I am amazed by the number of feedbacks I have already got. It feels good to be listened to and I am very thankful to all of you for that.
To come back on a few questions:
Yes we use 4mm needles et we systematically change sites. We have already tried smartphone/tv... but surprisingly so far it hasn’t worked. It might be sometimes painful for him but we think it’s mostly psychological.
We know injections are necessary but it’s very difficult to use our force to make his injections, I fear it will be traumatising.
So far support from the hospital has been disappointing, justified by the covid situation and lack of staff...we suspect an insuline allergy but it takes months to get an appointment.
We will try some of your advice, ladybird, bear, ice, sticker rewards...hopefully something will work
Thanks again

Hi again,

Another thought occurred to me. Are you using insulin straight out the fridge? That could sting..

If your boy has a superhero he looks upto. (Hulk or anyone else that eats spinach to "power up" in that way for action?) You could try a little faux science with the injections..

 

[Mike d]

We know injections are necessary but it’s very difficult to use our force to make his injections, I fear it will be traumatising.

I fear you're not listening !

 

[Adrisr]

I fear you're not listening !

Then please make longer sentences that will give me a chance to understand

 

[KesLouise]

I fear you're not listening !

Is not the most helpful response ....

I might not be the best person to advise but in terms of it being traumatising I get where you are coming from and know that you’re also aware of the need to do it

It sounds like there are some really good suggestions already, my friend got help for her young daughter through JDRF might be worth a go? They supported by showing her how to take control of the process of injection (under supervision of course) using a teddy bear

 

[lucylocket61]

First of all it’s the first time I am posting a question and I am amazed by the number of feedbacks I have already got. It feels good to be listened to and I am very thankful to all of you for that.
To come back on a few questions:
Yes we use 4mm needles et we systematically change sites. We have already tried smartphone/tv... but surprisingly so far it hasn’t worked. It might be sometimes painful for him but we think it’s mostly psychological.
We know injections are necessary but it’s very difficult to use our force to make his injections, I fear it will be traumatising.
So far support from the hospital has been disappointing, justified by the covid situation and lack of staff...we suspect an insuline allergy but it takes months to get an appointment.
We will try some of your advice, ladybird, bear, ice, sticker rewards...hopefully something will work
Thanks again

I have a friend who has a young T1 child. This is what she said when I asked her:

"this is something that is not negotiable. Even if he screams, it has to be done. Sometimes calmly just doing it, in a matter of fact way, has to happen. No pleading, no arguing, no treats offered. Just as you would with teeth brushing or road safety or bed times.
The amount of attention spent on trying to get him to agree can be fueling the situation. Keep your voice calm and quiet, and just do it, even if at first it has to be forced. Do not make a fuss afterwards, act like he just did something usual. No big deal or drama. Make it a low key part of his life"

 

[Chook]

I am a Type 2 but from what I've read on this forum if your son doesn't have his insulin he will become very ill and possibly die. So its better to give him his insulin by whatever means possible rather than fear his possible trauma.

Sorry to be blunt but that's how important it is.

 

[lovinglife]

I have a son with autism but not T1 - I think @lucylocket61 gave great advice, the bigger you make a “thing” the bigger it becomes - try stopping all bribes, cajoling, rewards etc and just be very matter of fact. Have everything you need to hand and try taking any emotions out of it and “just do it” easy to say but the quicker you do it the quicker it’s over. Don’t use food as the reward e.g) if you want to eat .... then you have to inject, could start a whole lot of new problems.

The teddy is a nice idea, I would do role play with teddy but not at the same time as his injections, give him stuff to play with like meters etc on his own terms let him do anything he wants with them in his imaginative play.

it’s very easy to for anyone to say to you just do it when you feel you are hurting your baby but your not, think of it like this - if he was going to run in front of a lorry you’d pull him back no matter how much he protested and it hurt to save his life. This is the same the injections are saving his life - no negotiations

 

[Hopeful34]

Hi @Adrisr welcome to the forum. I was diagnosed as type 1 when I was aged 2, am now 55. I really feel for you all, and can remember getting very upset at injection times. You mentioned thinking there might be an insulin allergy. Having had this with some insulins myself, it may be worth asking the hospital if you can try a different insulin, it's often the preservatives that cause the problem, and the longer you use an insulin that you have an allergy or problem with, the more painful the injections get. Does it happen with long acting insulin as well as short acting?
Also, some makes of pen needles suit one person better than another, so maybe try changing those if change of insulin doesn't help.
Other people may well disagree on this as we are all different, but from a very young age, I found injections painful if the insulin was injected quickly.
I do hope it becomes less traumatic for your son.

 

[Robinredbreast]

Good night,
Our 5y old son has been diagnosed with type1 diabetes three months ago. After the initial shock the following weeks have actually been ok, our son getting used to it and us (his parents) finding new daily organisation.
Unfortunately over the last two weeks things worsened and progressively our son showed more and more reluctance for the injections. He loves eating but now prefers not to eat if we tell him this will require an injection. The last few days every injection has become a battle it can take over 30 mins to be able to do it and sometimes doesn’t let us do it at all. Tonight I went for a check as he was sleeping and noticed he was high. I tried to make an injection but he woke up and categorically refused. I came back desperately one hour later while he was sleeping and tried again but he wake up as I was doing it and almost broke the needle. The situation has become unsustainable.
We talk to him a lot to understand what has changed and worries him now but he doesn’t speak much. Sometimes he says it hurts him but we are always very cautious and haven’t changed how we do it from the first two months.
Has anyone faced similar situation ? Any advice that could help us?

Thank you very much

Hi there, just wanted to say hello and I'm so sorry to read of your little boy's diagnosis. It can be a worrying and an anxious time for parents, family members and of course some children, it's a lot to take onboard, but in time it will get easier and children are tough little cookies.
Having injections is not nice, especially for such a young child. Have you talked to your boys diabetes nurse ( my granddaughter had her own DSN, she is 11 now) about his refusal to have the injections ? Also, did you receive a Rufus bear which has special injection sites on his body, maybe it's a different name or bear now, but this helped such a lot with my granddaughter.
Here is a link that could be helpful, I would get in touch with them https://jdrf.org.uk/. Also the parents section would be beneficial for you too, lots of parents with a good understanding with helpful and caring advice X
At the moment it feels like a huge mountain to climb,