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Newly diagnosed 5 year old's behaviour

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littlehi

New Member
Relationship to Diabetes
Parent of person with diabetes
Hello everyone. I'm mum to a 5 year old, diagnosed with type 1 about 6 weeks ago. He is on two injections a day with the highly regulated meal times and carbs and has been doing really well, doing his own tests and (usually) not kicking up too much of a fuss about the injections and the seemingly constant eating. (We're hoping to get his team to move him on to a better regime soon, but here they seem to start all younger kids off on this one).

However, in the weeks since diagnosis his general behaviour is getting worse and worse - he is lashing out at us, punching, kicking and screaming, running off and hiding, trashing the place and generally being like one of those kids on supernanny!! We know that his wee world has been turned upside down in the last few weeks and that he is scared and angry and doesn't know how to express it, but home life is becoming pretty difficult for us all as when he gets into one of these moods there seems like there is no way to get through to him. His behaviour did start to change a bit in the month or so before diagnosis but it's just getting worse and worse and we just don't seem to be able to help him. I asked his consultant about it and she said she didn't think there was a link between the two (?) and the psychologist on his team isn't that inspiring and didn't seem to have come across it before either!

I wondered if anyone else had seen this kind of thing and had any ideas about what to do? I really feel that it must be as a result of everything he has been through as although he had his moments before diagnosis, he was never anything like this. Sorry for the long post and thanks for listening.
 
Hi littlehi, welcome to the forum 🙂 Sorry to hear that his behaviour has changed - perhaps it is due to fluctuations in his levels, are you able to persuade him to check when he is in a mood? Highs or lows or just big swings can have a profound effect on moods.

I'm afraid I'm not a parent so can offer no words of wisdom. You might like to try on the Children with Diabetes site also - they operate an email list for questions. Some of their members are also members here, so hopefully some more constructive advice will come from them.

I hope things improve for you all soon 🙂
 
Poor little beggar - and poor mum and dad.

Fair do's mummy - I was 22 and I felt like behaving like that too. Of course I didn't, except on my own and I never broke stuff. Only wanted to do that when I had PMT 20-odd years later. I should say it's probably just an expression of how he's taking stuff at the moment - and who can blame him?

Plus the high or low BG, you can't think very straight at all then however old you are.

I'm gobsmacked at that psychologist. Has she honestly truthfully SERIOUSLY never seen a child misbehave/crave attention because something traumatic has just happened in their life? Normally I'd say straight away, contact your DSN and ask for counselling but there doesn't seem much point ......

I'm no psych. But I have got 7 assorted grandchildren and 1 great grandchild. And I've seen it happen.

Is your GP any good? Could you talk to him about it, do you think?
 
Hi Littlehi great name=there are lots of people with younger ones who will post soon [we have son 16 now] who can advise but to be honest its so early days I can see how hes kicking off -his whole world has been turned upside down. In time the routines do become a way of life its just a pain you have to think everything through each meal /activity/event etc. Is there another councellor that you can be referred to- in addition I spent many years working with children and young adults and have seen many a behaviour that would make your hair curl so like you said hes only 5 and cant really talk through how he feels- there is a bear you can order from JDRF -Rufus which has patches and injection sites and is a great tool for explaining tests and injections-the pack is free on 020 7713 2030 would that help?- and welcome by the way
 
In addition do your team run any activities for the younger ones -at ours they have summer camps etc which I think I would have explored if my son was younger
 
Hi Littlehi!
As if diabetes isn't enough on its own ... very hard for you all. My son was much older (13) at diagnosis so I can't comment directly, but I would like to recommend a service called Young Minds parents helpline:
http://www.youngminds.org.uk/for_parents/parent_helpline
I used it myself when William was nearly three, as his behaviour was very difficult, much the sort of thing you describe. He'd had a lot of change to deal with, new home, new sister, new child care. The service gives you the chance to chat your worries through with a professional (in my case we had a child psychologist) who will give you some tips for managing. You then touch base a couple of more times to see how things are going. It was really helpful - she explained that William was feeling out of control and gave us some strategies, including loads of routine, firm but fair stuff etc etc. It took him about six months to get back to his old self but we saw improvement pretty quickly. I used to sit up at night reading the child care manuals, thinking 'why doesn't he follow the rules'? A long time ago now, but I remember how very difficult it was. It will get better ((hugs))
Catherine
 
Thanks everyone for the lovely welcome and kind words.

It is reassuring to hear that high and fluctuating bg can affect mood too as our doc seemed to suggest that they didn't, even though it really seems like he starts bouncing off the walls when they are rising in particular. It would be good to see if we can test during an 'episode' but I'll have to catch him first which could be fun 😱.

It is really heartbreaking as he gets so upset once he has calmed down and thinks about what has happened and you can't really blame him for acting up as his world has turned upside down. We have Rufus but alas even he doesn't seem to be able to comfort our little one at the minute though he does sleep beside him every night.

His team are at a children's hospital so you would think they would have come across this a thousand times before. He has a check with his nurse next week (she has been great so far) so I'll ask her about what other services might be available and see how we get on and if not we'll talk to the GP. Thanks so much for the info on Young Minds helpline/website. It looks really useful though as we are in Dublin we might not be eligible. Will definitely check it out though as I suspect that the wee man feels everything is out of control at the minute so he tries to control what little he can by causing chaos.

Off to organise his little sister's birthday party this afternoon and keeping fingers crossed that we can avoid a meltdown. Thanks again everyone. Just looking at this forum has already been such a great help to us over the last month or so.
 
Hiya sorry to hear about the diagnosis. The mood swings will undoubtedly be sure to the levels. Am appalled the consultant didn't know this its basic stuff.
I'm appalled that the hospital put him on twice daily mixes. This is so old hat and the better teams out all under 5's on pumps immediately the others use MDI multiple daily injections. Once on a pump or MDI mood changes will improve immediately and he will feel better immediately as well.

I wouldn't wait till next appointment to ask to change. You could say you've done your homework and you want him on MDI now or a pump of course. As northerner has said take a look on www.childrenwithdiabetesuk.org and you can read about regimes but also join an email list, there is one for toddlers or busier main one where you'll get lots of up to date help.
 
Hi welcome to the forum btw! 🙂

Agree with what has been said already, poor lad has to cope with a huge huge change in his routine as well as the knock on effect of blood sugars bouncing around. My daughter can be clingy and emotional to ratty and a PITA on days we have instability.

It's surprising your consultant and psych don't recognise this, are they not experienced with kids so young or with honest and open parents ? It's not easy by any means.

The pump has given us the chance for more stable BG's as there was no way we could manage the (tiny) doses accurately with injections, she was either gonna be too high or too low, and having to push the inbetween snacks to keep BG's up is just another couple of battles a day you can do without IMO! Things have definitely been easier to manage with pumping.

All I can say is be patient, be consistent and loving and show you are confident ( despite what you are feeling )

Hope things get easier soon - come on here to vent away x
 
Hi and welcome from me too. Sorry I can't really give any advice about the behaviour issues as my son was a teenager on diagnosis. It is totally understandable that he is kicking off though, as everyone else has said, his little world has been turned upside down and it is bound to have some effect on him. Some children will sit and cry. Some will become incredibly clingy. Some will 'kick off'. I would say it's only a natural response. As people have said, big swings in blood glucose levels will affect his mood too.

It is poor that your psychologist appears unhelpful though. My lad is seeing ours at the moment and actually talked a little to me about it tonight and said it really is helping him come to terms with things (2 years post diagnosis). I know a parent at our local primary school with a 5 year old and she said they see the same psychologist fairly regularly (when I was getting frustrated that my son wasn't being referred to him) though she questioned the benefits to her son. He was diagnosed as a toddler though and so far seems to have taken it all in his stride (lucky them). I think for them it's as much that the psychologist is a familiar face to her son should he need help later on.

Could you get to talk to the psychologist alone as soon as possible, even on the phone if necessary, and really push your concerns. Say this certainly isn't typical/normal behaviour for your son and you recognise it as a sign of him being in trouble. I bet inside your little lad is feeling very very angry and bewildered by it all. This is obviously his way of expressing his feelings.

Do keep your chin up, and I hope you get some proper help very soon.

Take care.
Tina
 
Thanks so much to everyone for all the advice. We've had a slightly better week with 2 or 3 days with only minor meltdowns but then it's been half term so no routines to follow, just lots of playing with lego so that could explain it. But also relatively stable bg so maybe it's that too. Back to school and homework tomorrow so that will be the real test.

We also had our 6 week check-up today and not much progress to report there unfortunately. As he is always so good when he is there and indeed when he was in hospital, I think they think we are over reacting! In fact sometimes I wonder if I imagine it myself but then one look in the mirror or at my poor exhausted hubby and I know we are not. The play therapist came to have a chat and is going to send out a star chart but he is a smart kid and think he's gone past that stage now. But anything worth a try at this stage. So apart from that it looks like we will have to look outside our team for help with this.:(

They are keeping him on the 2 injections for the next month anyway as they reckon his levels are good (and he is in honeymoon period) and they try to limit the amount of injections the little ones have. I think they put under 5s straight onto pumps and over 8s straight onto mdi but we are stuck in the middle. But we will keep asking. I never realised what a battle this would be but guess I better get used to it!
 
Oh no, what a shame. Poor toot, I completely feel for you. I still have times like this with my son. Not so much tantrums because he's nine but ratty behaviour, overly emotional, it's a time for constant reassurance.

I find it interesting what's been said about the pumps and BG levels and behaviour. Wondering if we should be pushing for this a little more.

I hope your wee boy settles soon. It can be hard to know how to deal with something without feeling what they are feeling. Thinking of you.
 
Hello Littlehi (and everyone else!)
I have just joined this group and came across your post...sounds exactly like my 5 year old son!! He's been diagnosed 4 months, on 2 jabs a day. Psychologist doesnt really know what to suggest but sympathises... He was a lively boy prior to diag, and even more so since. He was always slightly stubborn and could hold his own with his older brothers but now behaviour is soooo bad - he will spit at them, physically fight them/hit them (theyre teenagers), he has been angry in Tesco car park (over nothing) and started kicking my car!! When he has been unpleasant or a bit 'edgy' i have checked his bm and sometimes he's been high/low but no particular pattern to it.....
Sorry, reading this post back no advice to be offered but you now know that youre not on your own!! 🙂
 
Hi kelly1234. Sorry I haven't been on here for a while and just saw your reply. Thanks so much for that, sounds like we are in the same boat. It is so reassuring to know that it's not just us though not much comfort for you either. I did giggle at the thought of your son kicking the car at Tesco though. We have been there more than once 😱 I just can't find a pattern to it either, sometimes he is completely crazy and bg is fine. But after 10 weeks of it, I think we are getting used to it now and maybe that will help as we don't get so stressed. Who knows. I hope things are settling with your son? I guess it is just so much for them to take on at such a young age. I'd think about kicking cars myself some days too.
 
LittleHi
you are definitly not alone and i can totally sympathise with you on this.
its so hard and frustarting to know what to do isnt it. merlin my son age 9 was diagnosed last novemeber, and his behaviour has gotten worse and worse, and the last few weeks have been horrendous. he is completelt fine one minute and then all hell breaks loose, last week we had two really bad episodes in one week, the first started he didnt want to go to school and it all escalated and he ended up getting a mahoosive knife and threatening my other two children with it, then he tried cutting his throat open with it, my daughter had to go and get my neighbour as im on crutches, a few days later he started smashing the house up and my bad leg wih my crutches, i have had several emotinall breakdowns lately, if you ever want to talk please feel free to inbox me or email me (can give you email addy if you want it)
my son has only been like this since diagnosis, which is sad.
i feel so sorry for them as its such a big upheaval for them, but like your son, merlin is fne having his injections, we only get the odd times when he cries or whatever.
im sorry i cannot offer any advice as im dealing with it myself, but i wanted to write this just to let you know you are not alone and im here if you want to chat
 
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