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8 year old, 7 years with T1D. Help!

Discussion in 'Parents of Children with Type 1' started by WittsEnd, Aug 20, 2013.

  1. WittsEnd

    WittsEnd New Member

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    Normally I am not one to put things "out there" on the Internet but I dont know what to do anymore. I have taken this issue to my family doctor who directed us to bring it to our endo because it was too complex for him. Our endo said "maybe try the child life specialists, this sounds more like their area". The CLS says "wow, that is really put of our scope, you need a referral to a psychiatrist" so we gladly take the referral. The psychiatrist says "well I think there may be some ADD there and clearly she is very anger but I am sure she will grow out of it"..... So, here I am in an internet forum hoping that someone here has had the depressing experience I am about to explain and can maybe give me some ideas or even just a simple BTDT, it passes.

    Dd was dx'd at 1 year old with T1D. At 2 years old came the celiac disease. At 3 yrs, our endo guilted me into getting her the flu shot. 3 days later she was paralyzed from the waist down dx'd with Guillian barre syndrome, a rare reaction to the flu shot. Then, finally at four she was dx'd with nocturnal epilepsy, a condition she will likely outgrow.

    So fast forward to when the heavy stuff started. Halloween of last year we were organizing the haul into the candy she could eat and the rest she redisbursed amongst her brothers. She then began to ask for her candy. We told her that she could have a piece but that would be it for the night and she could think about whether she wanted to trade all get candy for a new toy or whether she wanted to keep it for the odd treat here and there. This night was the first time she went berserk! She told me she hated herself and wanted to die. She ran into my kitchen, grabbed a sharp knife and began rubbing it on her arms. When we took the knife away she told me she would just wait until we were sleeping and come back for it. Sounds a little psycho, huh?

    Anyway, that night progressed into many meltdowns. Usually the included berating me, sometimes even punching and kicking me and then she found a way to take me hostage. Attack her pump.

    She would take it off and swing it against the walls, throw it, stomp on it, rip out her site and bite her tubing. What could I do? If I took it off her and switched to needles, things between us would be physical all day long. It became her favorite game and has become my worst nightmare.

    Anything sets her off. She is whiney and out of control and I am afraid that my patience is at such an all time low that one of these days I might hurt her in the process of trying to maintain some control over the situation.

    I feel like I am screwing her up....... And I don't know how to help her through all this anger. She doesn't act like this at school or dance or summer camp but we go through at least one production a day.

    If you made it this far, thank you. If you have any suggestions, coping methods or similar stories to share, even bigger thank you.

    C
     
  2. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    I'm not meaning to belittle your situation, but if I were a child and my halloween candy was "redistributed" to my brothers while I got one piece I'd be pretty furious and resentful.

    Maybe it would help to stop and examine your family dynamic from her perspective.
     
  3. Mish

    Mish Approved members

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    I think you need to get her to a competent psychiatrist, pronto.
     
  4. WittsEnd

    WittsEnd New Member

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    Let me clarify that:

    The siblings took all the gluten free candy and gave it to her. The stuff she can't have us given out to them. She still get lays potato chips, aero bars..... But the stuff she can't have she "trades" and I did say she keeps her "reserves" but I was not about to let her pig out on a whole bag of candy.

    But thanks for your input on my family dynamic.
     
  5. Christopher

    Christopher Approved members

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    Welcome to the site and sorry you are struggling. I agree, she needs to see a therapist, preferably one who deals with children with chronic diseases. She is probably feeling some sort of diabetes burnout at this point, among other things.

    I also agree with Sarah, you may want to re-examine how you are managing her diabetes, because giving her candy to her brothers seems unfair.

    Also, categorizing her behavior as "psycho" doesn't seem to take into account what kinds of emotions she may be dealing with. I know you are frustrated and upset, but you may want to look at your own behavior and feelings about her issues.
     
  6. Traci

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    I'm sorry you and your daughter are having such a rough time. That being said, I do think you need to seek professional help. Attempting to harm herself at such a young age is a huge red flag that should not be down played. If the psychiatrist you saw wasn't helpful, seek out another one.

    My son was diagnosed at 23 months. It's his normal and there is no anger about type 1. There's no acting out, no tantrums ever. We've always said that dealing with type 1 is just like brushing his teeth...not any fun, but something that must be done. It just IS.

    I do have a friend with a child who sounds a lot like your daughter...multiple medical issues (not type 1 though) and lots of anger, rage, tantrums, threats, etc. Same age, too. She overheard him trying to convince his brother that they should kill her! Anyway, she took him to a family counselor who recommended that they all attend as a family in addition to just the child. He gave her some techniques and coping suggestions that have worked wonders for their family. She found the counselor through the school counselor. It really has been life changing for them. If you aren't happy with a psychiatrist, please try a family counselor.
     
  7. kyle and ryans mom

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    I totally agree with this. I can't imagine how my son would feel if he had to give his candy to his brother because he has diabetes.

    She is really angry and needs a professional to talk too. The good thing is she's young and has a better chance of benefiting from help.
     
  8. WittsEnd

    WittsEnd New Member

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    Wow! Chris and Sarah, you completely misread what I wrote. We do not take all her candy and give out. The boys take their GF chips and Aero bars and things she can have and "trade". She doesn't get ripped off and is not left to sit in a corner while the rest of the family celebrates things. She is the centre of our family. Her brother dote on her and her father and I are very loving and attentive. Thanks for the input on your perception of our family dynamic though.

    Also, I didn't refer to her or her behaviour as psycho. As I was typing it "sounded psycho" retelling it.

    Now that I am done defending all the things you felt I was doing/saying wrong.......

    We live in a fairly limited area and the psychiatrist she saw heads up the pediatric psych program. I will however look into the independent family counsellor. Thanks!
     
  9. Amy C.

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    It is hard to adequately describe your problem on this forums. There are lots of misunderstandings -- be patient with everyone as they try to help.
     
  10. shannong

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    You sound like a very caring parent who is trying your best to deal with a difficult situation. When I read your post that's what I hear: things are difficult for you right now because you are dealing with a child that has some issues she needs to work through. I certainly don't see one night (Halloween night) being the root cause of any of this. Your daughter has been dealt some pretty significant hardships in her life and as her parent, so have you. I think reaching out for help in all the ways you have (even posting on this forum), speaks to your courage and not your weaknesses. I think a family counsellor will be of benefit. I'm not sure how far you are away from a children's hospital, but usually they have a pretty good team of psychiatrists, psychologists and social workers. Reach out for support for yourself, this must be very difficult on you.
     
  11. sooz

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    The candy swap was because of the celiac, it has nothing to do with D or family dynamics. Wittsend, you have so much on your plate! Has the Guillain Barre been resolved? My husband had it this year and was treated with IVIG. It worked for him. The flu shot was also the only likely cause. I don't have any advice I just want to let you know I care. I will be thinking of anything I might add. Perhaps there are resources that the school could provide? You must truly be beside yourself with worry and frustration.
     
  12. Christopher

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    Not sure if you have ever been on internet forums but you should expect to get a wide variety of responses, some you may agree with and find useful, others not so much. Some people will hold your hand and pat your back in sympathy, others will be more factual and logic based.

    My point being, it takes a certain amount of thick skin to participate on internet forums and not get bent out of shape every time you read something you don't agree with. People can only respond to what you type and in the "real world" there are many more layers to a situation.

    Speaking for myself, I was coming from a place of trying to help you and give you the advice you solicited. If you don't like it, feel free to ignore it.
     
  13. virgo39

    virgo39 Approved members

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    So sorry that you and your DD are having a difficult time. For what it's worth, i also misunderstood your "psycho" reference and how the candy was handled. Sometimes between the time that I compose a reply and submit it, other clarifications have been posted. That may have happened here.

    I do find it surprising that a child psychiatrist would seemingly take so lightly a child's threat of self-harm and the dynamic that has apparently evolved with her pump. Based on that, I would seek a second opinion.

    I would also seek out a family therapist, which could be a psychologist, social worker, etc.

    Are there ever quiet times when you can discuss her behavior with her? What does she say? I would also not rule out going back to MDI given how she is treating the pump. Is there a consequence to the poor behavior?
     
  14. Mish

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    perhaps if you mention where you're located someone here could help you find some support, and possibly locate other diabetes families.
     
  15. hawkeyegirl

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    I agree with everyone that you need immediate professional help. If the first child psychiatrist wasn't helpful, I'd try another one. The people on this forum can give you a sympathetic ear, but this is not going to be resolved overnight OR without a lot of professional help.
     
  16. Mish

    Mish Approved members

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    Nor do people live in her home, so we can only react to the actual words a poster has used. Nothing more. If a poster says her child is trying to harm herself we can either assume that this is actually what happened and err on the side of caution in which case our responses will reflect that urgent need, or we can assume a bit of hyperbole has been used (with phrases like psycho) and only lend that sympathetic ear.

    Assuming a poster is saying what she means and is being factual is always what I do. So I do apologize if you have read the responses as harsh but they were simply responding to what you wrote.

    Best of luck.
     
  17. MEVsmom

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    Just my two cents, I would see a child psychologist, not pyschiatrist. If you go to the psychiatrist, you will likely only get a prescription and not get the to the bottom of what is really going on.
     
  18. Sarah Maddie's Mom

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    Re-read your post - can't say that I have much of a changed opinion. Good luck, hope you can get some help for the whole family.
     
  19. sooz

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    I also re read your post, and what struck me this time is that it would be great if you were able to get a respite from the stress and worry. Can you take some time for yourself? Also if YOU could see a counselor for YOURSELF to help you strategize and cope with such a load of responsibility, it might be something to think about. Do you have family to support you?
     
  20. MamaC

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    Actively seek help for your daughter. Seek until you find appropriate care. She's dealing with A LOT.

    Seek support for yourself as well. You're also dealing with a lot and it seems as if you recognize the solutions may be outside of your wheelhouse.
     

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