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How Do You Get Over The Fear???

Discussion in 'Parents Off Topic' started by austin_calebs_mom, Mar 29, 2010.

  1. austin_calebs_mom

    austin_calebs_mom Approved members

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    How do I get over the agonizing fear of losing Caleb to D?? It's always been in the back of my head, but with the so recent experience of his first low blood sugar seizure and hearing about 3 CWD's dying from low blood sugar, it's all I think about. I'm so terrified. I've been having dreams about losing him and it's killing me. Just the thought of not having my wonderful, goofy, smart, kind-hearted little boy around is beyond agonizing. I can't sleep well...every time I close my eyes I picture how he looked after his seizure-he looked like he was dead. I can't imagine my world without Caleb in it and I'm beyond terrified that I'm going to lose him because of this damn disease. It's not fair. Our kids shouldn't have to be scared to go to bed at night because they're afraid that they won't wake up the next day. I've been hiding this from everyone, especially Caleb, because I don't want to freak anyone else out. I feel like I'm going to go crazy because I can't stop worrying about it......
     
  2. StillMamamia

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    I don't know what it is like to have a kid go through hypoglycemia-related seizures, so I can't give you much advice.:(
    The thought of one losing a child is a terrifying one.
    Maybe time will help...
     
  3. chammond

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    We have never had a low related seizure, but almost lost logan to DKA at dx. That has been about a year and a half ago, and still can be upsetting to think about. I worry about the seizures and low related deaths also. I don't know how you get past it, but hope that a little time helps you.
     
  4. VinceysMom

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    I'm so sorry you are going through this. I suppose we need to think about all of the good times we have with all of our children, the crazy goofy times, the grins, the giggles, the smiles, the hugs, the here and now. I'm sure it is a lot to overcome, and I cannot imagine how your heart must hurt after seeing him like that. ((( Hugs ))) to you.
     
  5. saxmaniac

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    I deal with it rationally, which admittedly doesn't work for most people.

    We tend to be more fearful of extremely rare problems, if they are spectacular. We are less scared of common things that are way more dangerous, if they are commonplace.

    The rate of being killed in car accidents or swimming pools is probably much higher, than being killed by diabetes. Despite that, Alex still swims and rides in a car under my supervision.

    If so, then it's absolutely pointless for me to worry more about the diabetes, but not be more worried about driving him to school.

    In reality, we always check one or two times at night.
     
  6. Rukio

    Rukio Banned

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    Just, check often, about every three to 4 hours in the night, and/or use a CGMS. I nearly died from a low last year, not a comforting thought, but hey, I'm still alive. You could get a Diabetes alert dog, but that might be a bit harder to train and get then a CGMS. Some parents sleep with their kids so they can moniter it better.
    Sorry, I'm doing algebra and I'm trying to type. I'm sure other people will post ten times better things. But, just test often is what I do.
     
  7. Becky Stevens mom

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    Kayla, I want you to sit down and have a serious talk with the endo or CDE might be better. Explain what happened and why you are fearful. I want them to be able to try and put your mind at ease with facts about severe hypos. How often they can lead to tragedy. Exactly why a child has a seizure. Knowledge is power and I want you to have lots of knowledge about this so you can feel empowered. I also want you to be in CWD chat Thursday. Will you do that for me and with me please? sending you big (((hugs))) honey:cwds:
     
  8. denise3099

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    Well, anything can happen to any child, from getting hit by a car to being dx with cancer, but I'm on them so I can't help feeling that as long as they are under my care, they are safe from most things. D is something that I am on, as well as penut allergy, (both have deadly peanut allergy) so even though anything can happen, I work hard to keep them safe so I trust that.

    However, I am TERRIFIED of my kids actually growing up and going out into the world. I know it makes no sense at all but I can't help feeling that they HAVE to be safe since i work so hard at it. :eek: I'm going to have to take a dorm room when they go to college. The thought of them out in the world with d and pa makes me want to throw up. I'm hoping there will be a cure for both by the time my little ones leave the nest.

    I'm not trying to make sense, just sharing my own irrational thoughts. :rolleyes:
     
  9. austin_calebs_mom

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    Becky, I will try to be here for the chat Thursday.

    I know that my fear is, in a sense, irrational. And I know that if Caleb wouldn't have just suffered a seizure, that the fear wouldn't be so great.

    It just hurts so bad to think about and it won't go away.
     
  10. Becky Stevens mom

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    Oh no honey! your fear is not irrational, not at all. That is why I want you to be here for the chat and to talk to the endo or CDE about your fears. I know they wont be able to put all your fears to rest. But I worry about you getting sick if you dont get enough sleep also. Im sure you and Matt have discussed a testing schedule so that you can both get some sleep and test Caleb when you feel you need to
     
  11. Toni

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    This is the sensible way to think about it. If fearful, check more. It is just so rare. Of course never had a seizure so, having experienced that, you will worry more. Maybe time will heal that fear.
     
  12. MySweethearts

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    ((((hugs)))) I understand. When Luke was dx'd, I will never forget the way he looked in his crib when I went to check up on him . He was an ashen color :( That is when I called my DH to come home right away. The way I deal w/the fear is to pray. I pray my heart out and I pray for peace in my heart. I understand not being able to talk w/anybody else about it too, that is why I love this place :) I check Luke about midnight and it depends on where is # was at bedtime if I check him at 3:00.
     
  13. czardoust

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    I used to have those nightmares when Kat was going through the months of so many LO lows and the period of 3 months when she had 2 nasty, herky-jerky seizures. I haven't had one of those dreams in a very long time. But please don't think I'm able to get through the day without it being in the back of my mind. I think that's normal for any parent of a T1D, because we know the possibilities.

    The way I got past the fear (it consuming me, making me have night mares), was to check check check. Set the alarm and check at 11 pm and 2 am, or if you are like me, just go to bed at midnight and check right before bed, then check again at 3 am. I had to adjust the Lantus when she had those lows and make diet changes (more protein at night, less snacking on carby foods where the sugar doesn't "Stick"). I'll write more later got to go.
     
  14. RosemaryCinNJ

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    I went through what you did with Amanda when she was first diagnosed..it is horrific to see and I used Glucagon on her twice..I think the fear is always there..more so during the night. I know you are probably giving Caleb a snack before bed and doing all you can as we all do with our type 1 kids..Calebs seizure is fresh in your mind and it IS scary..thats your baby..but I know you are a fantastic mom..from here and on facebook and he is in very capable hands..yours!! :) Im scared too. I dont think it ever really leaves you..
     
  15. Amy C.

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    You don't get over it. You just manage it better over time.
     
  16. sariana

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    We have been lucky so far with no seizures *please note that I am knocking on wood as I write this*, but I think that fear begins with everyone once a diagnosis is made.

    I would suggest talking with your doctors about it and joining with the chat as well. Sometimes more knowledge helps deal with the fear.
     

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