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Diabetes and your child's emotions - your experiences please!

Discussion in 'Parents' started by J's mum, Oct 20, 2014.

  1. J's mum

    J's mum Parent · Member

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    Hello!

    My 10 year old son was diagnosed at the end of the summer holidays and has almost completed his first half-term at school. We are really proud of him and how well he has coped with the diagnosis and he is even doing his own injections :)

    However, we have seen a decline in his behaviour (at school and home) and also his grades at school have started to slip too. His behaviour can be erratic and silly (almost like he has regressed) and he can have angry outbursts directed at me (usually about food) and then he will be teary and apologetic 10 minutes later!!! I am trying my hardest to be patient and understanding but in all honesty I am feeling a little overwhelmed by this daily roller-coaster of emotions, coupled with the fact that we, as parents, are on a steep learning curve too plus being 'zombified' from getting up in the night to check his blood sugars.

    I was wondering whether any other parents have experienced this with their newly-diagnosed children? I guess what I'm really asking is - 'Is this normal?' and do things get better??!

    Thanks in advance,

    J's Mum x
     
  2. donnellysdogs

    donnellysdogs Type 1 · Master

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    Hi J's mum

    Can you confirm if your son's readings are within 5-8 during these times of change?

    I'm not a mum.. I'm a T1 though.

    I'm thinking that your son is still very new to this diagnosis and that levels may still be fluctuating and also that outwardly that your son may seem to be coping brilliantly but inwardly he will be feeling very different to everyone around him.

    If its possible, (i know some hospitals are fantastic with this) see if they organise any meet ups for diabetic children. I know of one hospital that even arranges overnight camps for diabetic youngsters.

    It is really hard for a youngster to accept and although outwardly seeming as if they are doing well.. Inside their emotions are thinking "why me" and they have no one else to really appreciate what they really have to do.

    I'm sure some parents will be along with some advice. I'm hoping my answering will bump you up the list for them to answer.
     
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  3. J's mum

    J's mum Parent · Member

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    Hi Donellysdogs,

    Thank you for your lovely, reassuring reply. It's good to hear from somebody who has experienced diagnosis first-hand. We have relatively good control within the 5-8 range most of the time, but he plays a lot of sport and things can go a bit awry whilst we try to get to grips with how the exercise affects his blood sugars (highs and lows!)

    I think you are right - it really struck a chord when you said about him feeling different to everyone around him - he keeps saying that his school friends don't really understand his diabetes.

    We were lucky to meet a lovely family with a lad a similar age to Joe (who is also a T1) when he was first-diagnosed in hospital. They bonded over the Xbox in the games room and Joe was able to ask this lad lots of questions & he did find it reassuring that he wasn't the only one. I will ask at his next clinic appointment if we could perhaps get in touch with them.

    Thank you for your brilliant advice - I had heard about the camps and I think I might do some more research as I think he would really benefit from it.

    Kind regards,

    Joe's Mum x
     
  4. Smitten73

    Smitten73 Parent · Well-Known Member

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    Hi J's mum

    My son was diagnosed in June this year with T1. I would say his behaviour definitely changed over night. He regressed. He is still a good lad, but almost turned into a spoiled toddler with his behaviour with me. I totally understand why he acted like it. He was scared and wanted to let me know he needed me. He didnt know how to express it any other way I think. Hes getting better now. Still wants me to run around after him and do the injections if needed, which I will do. He is very unhappy though. He unfortunately isnt a 'joiner' and is disinterested in others with diabetes too. Most of his behaviour right now is due to being a teenager as well, I think. Oh joy! Haha.
     
  5. donnellysdogs

    donnellysdogs Type 1 · Master

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    Hi Joe's Mum

    It would be a great idea to be able to find out if your son can meet up with the other T1 that he met in hospital. He would definitely feel as if he is not the only person with this disease.

    Sport is always a harder balance to get, and of course children have different activitys at different times.
    I know of a young girl using a pump and how worried her mum was when she was going to do a cross country run with her school friends to tey and ensure the daughter didnt go too high or too low. This same daughter had exceptionally good opportunity from her hospital to go on the over night camp stays. Again a worrying time for the parents but giving her child a time to meet up with others that were on injections or pumps.

    The "tantrums" I suspect are frustration and emotions towards his new changes in his life. As teenagers or adults it is still **** tough to have to do something everytime you get up, go to bed, or sleep. Its tough. As a parent you want to protect and encourage your child but unless you are actually diabetic yourself you are still different to how we are.

    Even after 20 years with hubby, only last year I told him how it irritated me that I would cook the meal, serve it and still had to do a blood test and bolus before I ate. He now does the majority of the cooking and serves me 1st and lets me have that time to do my test and bolus.

    And then my mum... 30 years of occasionsl visits, but on every visit, every meal asking if I am high or low. Well it took 30 years to tell her how irritating that was.

    Theres load more examples of irritation I could give but at some point I would ask your son how he actually feels and if you are doing anything that irritates him ie telling him to test, perhaps when he knows he has to test etc...

    I hope this will bump up to get some more responses.

    Definitely follow through with hospital friend and meeting youngsters.
     
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  6. donnellysdogs

    donnellysdogs Type 1 · Master

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    Incidentally with both your sons- are they treated differently at school? Do they have to inject elsewhere? Are their friends being understanding or possibly taking the mickey or bullying your sons because they are "different".

    That can also have an impact on learning at school and behaviour. You only have to be "different" to find that your friends react differently to you...

    It may be that you can speak to your sons' welfare people / teacher at school with your concerns. I personally, if it was my son would ask how his friends feel about him injecting etc.. And I would be going to speak privately to a person at the school.

    You will be also exhausted from nightly checks and the differences it makes to your lives too.

    It maybe longer term that your children and yourselves may wish to consider a pump with a remote control. Then your children don't feel different about having to get injections out everytime, but then they have to keep the pump attached to them all the time. So swings and roundabouts. The lady I mentione above had her daughter given a pump at 8 years old. Many sleepless nights, but daughter does like the pump in preference to injections.
     
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  7. Smitten73

    Smitten73 Parent · Well-Known Member

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    Hiya

    I dont really want to take over jsmums thread but no, he isnt bullied at school and his friends are really supportive. He is in his final year secondary and gcse's are looming. He takes himself off to do his injections and testing as he doesn't want anyone 'not in his circle' to know his business.

    You mention a pump probably at the exact same moment he called me into his room expressing an interest (after 4 months of not wanting to discuss the matter at all). He was offered one right in the beginning, the day after diagnosis but flat out refused.

    I do feel like mine and his relationship, probably the same as jsmums, has turned into a diabetic relationship too much. Kind of like its hard to think and talk about much else. I did want your advice on how to not do his head in about this. Like, what not to say to keep from annoying him too much? Its hard to step back when you worry and love them so much, especially when its only been a few months. He didnt test at school today AT ALL. Thats the first time that has happened. I don't want a battle.
     
  8. donnellysdogs

    donnellysdogs Type 1 · Master

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    Tip one for parents:

    Stop trying to scare me with diabetes statistics.
    You’ve told me a million times that many years of high blood sugars can hurt me. I understand you are scared and want the best for me, but bugging me about complications just makes me want to tune you out. If I need motivation, it has to be something important to me right now, not way down the road.
     
  9. donnellysdogs

    donnellysdogs Type 1 · Master

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    Tip 2 for parents:

    When my blood sugars are high, don’t assume I’ve done something stupid (although I may have).
    It may be hard to believe, but sometimes it really isn’t my fault. Blood sugars can get wacky even when you do everything right. Instead of grilling me about why they are high (which may have no answer), or what I might’ve done wrong, let’s figure out what to do now.
     
  10. donnellysdogs

    donnellysdogs Type 1 · Master

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    Tip 3 for parents:

    Please acknowledge when I’m doing something right, not just when I’ve messed up.
    You may not notice it, but taking care of diabetes is a lot of hard work. And it is not fun! I may not be perfect, but there are a lot of things I am doing right every day just to stay alive. A pat on the back for a job well done would be awesome.
     
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  11. donnellysdogs

    donnellysdogs Type 1 · Master

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    Tip 4 for parents

    Don’t always be in my face about diabetes, but don’t leave me completely alone with it either.
    I know this is a tough balance. I don’t want to be constantly hassled about what I should be doing. I need to handle diabetes more on my own. Still, though I hate to admit it, I am glad to know you’ve “got my back.” Let’s figure out where you can trust me to do things on my own and where I could still use your involvement.
     
  12. donnellysdogs

    donnellysdogs Type 1 · Master

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    Tip 5 for parents:

    Make the effort to understand diabetes from my point of view.
    If you don’t have diabetes, you can’t possibly know what I am going through. The reality is that diabetes is unfair, inconvenient, a lot of work, and it sucks. No need to cheer me up, or to tell me that it could all be worse. You don’t have to fix it; instead, just listen when I need to vent or complain.
     
  13. donnellysdogs

    donnellysdogs Type 1 · Master

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    Tip 6 for parents

    Don’t tell everyone about my diabetes, especially not during the first minute you meet them.
    Do you have any idea how embarrassing this is? I know you mean well, but my goal is to fit in, not stick out. Everybody does not have to know. Give me a chance to let me tell people about diabetes when I am ready to do so.
     
  14. donnellysdogs

    donnellysdogs Type 1 · Master

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    These are teen diabetic etiquette, but some are very true for kids of any age.

    Especially the last one. It reminded me that when I spoke to my mum after 30 years of taking her concerns.. I told her that "i'm not your diabetic child... I'm your child foremost and you have always added diabetic in....

    You do have to let your children be able to speak to you without "whats your levels", have you tested, you can't have that...

    Rather than at a table and saying test for example, watch and if they don't test and inject... Try saying you need them in bedroom after eating and saying quietly.. I didnt see you test or inject... And gently ask why.. But don't do it at the table...

    I know their levels will go up, but if they start to know its going to be a fight pre dinner about testing it just highlights they are different.

    If they are with other children playing, don't go to them infront of the children and say "you need to eat, test etc". Just ask if they could help you with something... Don't highlight they are different.

    Don't make a point if they want a sleepover at friends that you will have to check that their parents can handle the diabetes. Don't mention it to them, just quietly check with the parents.
     
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  15. Smitten73

    Smitten73 Parent · Well-Known Member

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    Thanks for that. It's great advice. Thanks for taking the time to reply. It's hard to eliminate diabetes talk, but will defo take some of those suggestions on board. I think as he grows in confidence and starts doing more for himself, I can relax a bit with it. :)

    Sent from the Diabetes Forum App
     
  16. J's mum

    J's mum Parent · Member

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    Yes, thank you for all the help and advice :)

    And good luck with your son, @Smitten73 - it's a steep learning curve isn't it!! xx
     
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  17. Angiejean

    Angiejean Parent · Member

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    Hi I am a mum of a newly diagnosed diabetic.
    I have found some aspects ok. The carb counting etc. As a calorie counter I don't find counting the carbs hard just getting the right result at the end. My daughter is very active with really high energy and it's all or nothing with her which is why the same food, insulin over the same days never gets the same result. I liked your posts about tips for parents as her results are all I think about at the moment. All I ask her is " are you ok" truth be told unless she is low any highs don't make her feel any different and when we look at the number it is a real shock sometimes. Does anybody get it right all the time? I would say on average we get 3 out of 4 results each day in target. Is this normal or do most people get more? . In target being between 4-10. I find myself worrying really badly when it is above 10 but from what I think I have grasped from these discussions is that the sugars mustn't be high for too long and the occasional high isn't the end of the world - which sometimes as a parent it feels like as I see that result is a failure somehow it then stresses me out till the next test 4 hours later to see if we are back in range. I find that I can't keep testing her in between because that would drive her mad.
    What are the results that most other parents get and how much do they test? I do feel that unless you know someone else you never really know what the "average real" results are for children.
     
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  18. donnellysdogs

    donnellysdogs Type 1 · Master

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    Any children out there to tell us oldies any advice on what you find annoying from your parents?
     
  19. Hebe

    Hebe Type 1 · Active Member

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    Hiya
    I'm 15 and read this section as find it really interesting to see diabetes from the parents point of view.
    With the school aspect, I've found that since having diabetes school no longer is my priority, like it is or should be for people around my age.My priority is my heath but I wish school could be my priority but that's just how is has to work for me to prevent complications.This is something I still find hard to come to terms with.
    Hebe :)


    Sent from the Diabetes Forum App
     
  20. donnellysdogs

    donnellysdogs Type 1 · Master

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    Thank you Hebe. It is great to hear from a younger person.

    Can I ask please, who told you about complications. And how you were told. I ask because at some point, some children tend to forget about the complications and the diabetes and it would be interesting points for us 'oldies' to considers when we talk to youngsters, children etc.

    Hebe, also, some children just forget their diabetes to sort of fit in with their friends.... What do you think that parents should do in this situation?

    It's just to try and help us to say the right things to our children.
     
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