One year on and 3GS old son is very upset and angry

[Blissfool]

Hello...it is coming up for 1yr this month and, despite managing really well with cannula changes and all diabetes stuff since his return home, my little boy Django has recently started to really sob and shake at c change time, very anxious, trying to be brave, tries over and over to do it but then breaks down sobbing. He is running away from checks and gets angry when we need to do pump inputs. He says he is scared, that he is sad too, but if we try and talk to him or with him, he disassociates by watching tv programme, or diggers on the you tube, or trying to change the subject or goes silent and then will only speak using his toys. He is smashing toys into each other and into me, then gets upset and says sorry when he hurts me. There is obviously so much emotion in there, being three and having to deal with all the diabetes stuff too. He is also sobbing that "it is all my (his) fault" and is not telling me when he is feeling low, even though he is aware now, so we are getting low's in 2's every day (except yesterday when he wouldn't let us do a faulty site change and was in 20's all night, with 3.7 ketones!). We end up resorting to pinning him down, which is terrible for everyone, and the tiredness and stress make me shout too, at times. The diabetes team provide absolutely no support for us as a family, or help in explaining things to my son, who knows that he got really sick and no one knows why. Is this true everywhere or do other teams provide help/play therapy/family support? Anyone got any tips? Is this common a year in?
I hate that to look after him I have to hurt him every day. And that he blames himself.
Xxvikki

 

[Osidge]

Hi

I am probably not the best help for diabetes in infants but here goes. Have you tried using the resources at http://www.diabetes.org.uk/Guide-to-dia ... -diabetes/

You might also want to try the Diabetes Uk confidential care line:Call: 0845 120 2960*, Monday–Friday, 9am–5pm. They may be able to answer some of your questions and signpost you to other resources and help.

Hope this helps for now. There is a great fund of knowledge about diabetes on this forum and, hopefully, someone with experience will share some of their knowledge with you.

Take care

Doug

 

[Jen&Khaleb]

You can also contact JDRF who may be able to put you in contact with a parent support group or they may have some ideas to help with the canula changes.

Have you tried icing the area before changing the canula to stop it hurting? Can you use the toys to talk with them and do a canula change on the toys to help explain what is going on. I sometimes give Khaleb's toys a little pretend dose of insulin and a bsl so he sees it as being pretty normal. Is he a really heavy sleeper that you could do some things at night and not wake him. 3 yr olds are reknowned for some bad behaviour and as parents we can sometimes take it a little too seriously. He might just be pushing the boundaries to see what he can get away with and putting on a bit of a display. You might just need to be tough and tell him what you are doing and when you are doing it. Bribery can be a good thing so he could get a reward when he is cooperative and ignore the bad behaviours. You could set an alarm clock to tell you to test and that way it would be the clock telling you to test and not you being the bad person and then he could blame the clock and not you for his discomfort. It is good to be inventive with kids and try to make things fun where possible. Hope you find some good tactics to improve things at home.

 

[SophiaW]

I'm so sorry your son is having such a hard time of this Vikki, I can imagine how upsetting it is for you to see him struggling with it. If your diabetes team aren't being helpful with the emotional side please see your GP and discuss with him/her. There could be someone else he can be referred to for help other than your diabetes team. I do think what's making it all the more difficult for him at this time is that 3 years old is a difficult age for any little person, even without diabetes thrown into the mix. But I think this is a delicate age and you want to handle it correctly. If you're getting upset and shouting I think you need someone to talk with too, like already suggested perhaps a support group of other parents who understand what it's like. Your son will benefit from seeing other children with diabetes doing injections or putting numbers into pumps. Your diabetes team should be able to put you in touch with a group like this. I don't believe holding him down is helping anyone and although it might be your only option now there must be another way of getting the set changes done without having to do this. It must be upsetting for both you and your son.

Have you tried a reward sticker chart? Does your son have an interest that could become a good motivator for him? Perhaps the promise of a favorite activity like swimming, a digger DVD, reading a favorite book with you or whatever it is that would motivate him. I found with my kids when they were younger that we'd do the reward chart to quickly and easily earn free rewards, like reading a favorite book together but once they'd achieved say ten of those easy rewards then they'd earn a bonus or jackpot reward of having a day out swimming or to their favorite beach. You want easy rewards to earn along the way to keep the motivation going whilst they're aiming for the big prize. For a three year old you want those free rewards to be earned nearly on a daily basis, they need fairly quick and instant reward at that age otherwise they can quickly lose interest and it's veiwed by them as being non-rewarding.

Does he do any of the finger prick testing himself or do you do it for him? If he's not doing it himself you could perhaps try teaching him to do it for himself. It might make him feel a little more in control of the situation if he can do some of the tasks for himself. Have you ever done a finger prick test on yourself infront of him? If he sees someone else doing it without any fuss he may find that reassuring. You could compare numbers and if he's able to do a test himself perhaps he can do a test on you. Make sure you use a new lancet for hygiene etc.

For the set changes Jen suggested using an ice cube. You may also want to try using Emla cream to numb the area first. If it is hurting him I don't blame him for not wanting the set change done. Otherwise if you believe the set changes are hurting perhaps you can try some different types of cannulas to see if a different type is more comfortable for him. Doing the set change at night when he's a sleep if it doesn't wake him is a good idea which Jen suggested.

When you need to talk to your son make sure you choose a time and place where there are no distractions for him and he is calm and relaxed. We found Jess' best place for chatting was whilst she was in the bath. Have the TV turned off, toys packed away etc. Some children do find it easier to talk and listen when they have a favorite toy in their hands. Talking about diabetes may be easier if you have a book about diabetes to look through together. I bought Jess a book called The Bravest Girl in School. It's probably aimed at an older age group than your son so look around as there is probably something more suitable for your son's age. The book although not too indepth about diabetes was a good tool for us to read through together and was used as a prompt to get my daughter talking to me whilst we shared to book together. Rather than me talking first we read the book and that prompted her to ask questions and say things throughout the story, I found myself doing less talking and simply answering questions or responding to what she had said. The conversation was very much driven by her rather than by me.

 

[annettekp]

Aw poor Django. Wonder if it would help to meet other kids on pumps/with diabetes. I think Erland is helped hugely by his older 2nd cousin who is on a pump. He sees he's not the only one.

Does Django have a favourite teddy or similar? Erland has sheepy (who gets his finger checked and injections from time to time) and we've got him a toy pump which he's having great fun with. When we put the first set in (and bear in mind we've only done one so far) we put a real set and pump on sheepy first. Might help.

There must be a support group somewhere near you and your DSN should be able to put you in touch with them or a local branch of Diabetes UK.

Annette

 

[Blissfool]

Thanks everybody for your supportive suggestions. Alas, have done and do them all already. Since writing the post my son has started talking about the dental surgery (butchery?) he endured last November - very deeply buried but devastatingly, from all he describes, it is becoming clear that he came round before surgery was complete (this was the 20 mins I was physically refused entry to the room where he was screaming hysterically for me). His dreams are very vivid too that back this up. So, we are letting him process and share what he can, and being firm but gentle on the changes. As for parent support group, it is me that is trying to set one up, and in doing so have made contact with another couple of mum's with little ones on pumps/mdi. But sometimes, I could do with support from my diabetes team, and not be the one to set it all up! I do see a counsellor twice a month, privately (no service locally on nhs)...I think Django needs extra support but as usual, will have to improvise and DIY it! X