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When???

Discussion in 'Parents of Children with Type 1' started by dshull, Oct 1, 2012.

  1. dshull

    dshull Approved members

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    Hello,

    I am new to all of this - my 7 year old son was diagnosed in early August. I am still having a very hard time with this. I cry everyday and cannot shake the worries/sadness/confusion/anger. It is so upsetting to me that so many people around us do not seem to get this (or care to get it). This would include many relatives and friends who seem to think we should be grateful he's not dead and then move on with a happy smile. If I hear, "well, it could be worse...." one more time I might hit someone.

    I have come to terms with giving shots and even with counting carbs. Those I have a handle on pretty well at this point. It's the worries I can't shake no matter how hard I try. Worries like:

    - He will pass out somewhere and there will be no one there who knows how to help him.

    - I will wake up in the morning and he will be dead because his sugars dropped too low and I slept through it.

    - How many times am I supposed to check him at night?? Endo says none if I check before I go to bed and it's a "good" number. But then all the mothers I see online get up multiple times. I am a wreck without sleep and getting up every night is killing me. But then if I try to not get up, I can't sleep either because I am obsessively worried if he's alive or not. So either way, I am exhausted and can't think straight.

    Everyone says it will get better with time. I have a very hard time believing that the above worries will go away EVER. I have tried to remind myself it could be worse, and I know that. He could have terminal cancer, which would of course be worse. But right now, I live in a world where I feel like we will live like this forever. I am so tired of crying. I am so tired of worrying. I am so tired of the thought that no matter how hard I try, his diabetes is never ever going away and he will deal with this for the rest of his life. And I am so tired of watching the rest of the world carry on around me without this pain.
     
  2. DsMom

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    I'm so sorry.:( What you are describing is what most, if not all, of us have been through in the early months after dx. So don't be hard on yourself or feel that there is something wrong with your reaction...there isn't. It is perfectly normal. Your fears are also perfectly normal.

    And I know that right now it may feel like you will always feel this way...but you need to look at the experience of those of us who have gone through it and come out the other side and know that these feelings DO change and get better. I don't know that they ever go away completely. But, as you go through day to day life with D and successfully navigate different experiences, you will gain confidence in your management skills and in the fact that those things you describe are highly unlikely. I'm sure you will inform and prepare anyone who will be around your son about how to deal with D emergencies, and I am assuming he travels with some sort of D kit with his meter, fast acting carbs, and glucagon? Frequent checks of his BG are his best defense against the dramatic lows you envision. Does he "feel" his lows? If not yet, don't despair...it can take some time for kids to recognize the feeling.

    Regardless, these intense feelings of anxiety and fear will slowly but surely decrease over time. It does take time. Unfortunately, there is no shortcut through the fears of early days after dx.:(

    As for overnights, my son's endo said the same thing at dx, and I spent the whole first year only checking overnight unless he was sick or there was an insulin adjustment. But he also ran way too high overnight that first year.:( You will find a range of how many times per night people check. Some get up every 2 hours, bless them:cwds:, but I am definitely not in that camp. Others do a once nightly check. I do check my son at 10:30 or 11:00...if that number is fishy in any way, or he is sick, or he has been very active, or I am adjusting his rates...I will also do a check around 2:30 or 3:00am. For me, that means I am up at least several times per week overnight. Some nights, it means I am up several times per night. I know this is hard...but it actually will ease your anxiety and improve the quality of your sleep...not to mention the more important job of keeping his BGs in a good place overnight.

    You are still in the oh so early stages of this...you can't expect to feel matter of fact and comfortable about it so soon. If you need to cry...cry. Your family has been through a terrible shock and you are dealing with a new reality.

    As for others "getting it," it is rare to find someone without Type 1 who will. I'm sorry. What I try to do is put myself in their shoes. If they have a child with autism, or asthma, or cancer...I can't possibly know what that is like. I can try to be kind...but I will never "get it." Everyone here "gets it." Lean on us...someone will always be here to listen and help.

    My niece, who is an adult, was dx at age 2. Throughout her childhood, she got straight As in school, participated in sports, and had many friends. She went to college, became a teacher, fell in love, got married, and now has 2 healthy, adorable kids. She is now in her 30s and complication free. She is happy, healthy, successful...all the things we want for our kids. My other adult niece with D is pregnant with her first child. She runs, bikes, swims, kayaks, and is a flight attendant who travels around the world. She is healthier than I am!;):eek: Your son will have the wonderful life he was meant to have as well...while he deals with D...and he will deal with it. He will adapt and thrive. But give yourself and him some time. This does not happen overnight. Read and believe what those of us who have been there tell you...and try to visualize that light at the end of your tunnel. These dark days will NOT last. Just take one step at a time and know you are headed to a better, more relaxed, more normal-feeling life.

    Take care!:cwds:
     
    Last edited: Oct 1, 2012
  3. MelissaAL

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    Not sure I can add anything to this excellent post! Those first days are dark but they don't last forever!
     
  4. natallia

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    Great post, Julie! ;)
    " For me, that means I am up at least several times per week overnight. Some nights, it means I am up several times per night. I know this is hard...but it actually will ease your anxiety and improve the quality of your sleep...not to mention the more important job of keeping his BGs in a good place overnight."

    exactly!!!!
     
  5. Turtle1605

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    Some great stuff in the prior posts! The anxiety will decrease over time (thank GOD!...because nobody understands what we are going through except other parents like us and the anxiety is enough to kill anybody!). The tears will slow down, too. Actually, finding this forum was the only thing that kept me from thinking I was literally going crazy for a while...and is still a life saver on days I can't take any more.

    I have also received some great messages from adults who have lived with type 1 for many, many years. Knowing that they are perfectly fine adults who have lived normal, healthy lives brought me so much relief. Some actually pointed out how they are healthier than anyone they know that is in their age groups because they understood how their bodies worked and what their bodies needed from such a young age.

    In the first many months of diagnosis (I mean at least the first 6 months), either my husband or I slept with our son. It made it easier for us to do the checks since we didn't have to wander around the house in the middle of the night and put us more at ease so that we could sleep better. So...if that might help you...go for it to see if that helps. Some people also use the little headlamp flashlights that you can put on your head for night checks...we like those because we found the fewer lights we turn on...the faster we can fall back to sleep. :)

    Please don't forget to TAKE CARE OF YOU. We always seem to forget to do that when it is very important! You can always talk to your doctor about what is going on and what you are going through...your doctor will completely understand and may have some very helpful suggestions.
     
  6. Darryl

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    Totally understand, but it's true. It could be a lot worse. T1D is just about the only medical condition a child can face which can have practically no impact on their life or lifespan.

    That's good, especially the shots. Some people (like me) never get past that part...

    As long as you check often and adjust the BG often enough, you don't have to worry about these things.

    I would give you two recommendations:

    1) Definitely check overnight, no matter what any Endo tells you. BG can vary wildly overnight even if BG is just perfect at bedtime. Testing overnight, say midnight at 3 AM, will cost you some sleep but give you immensely more peace of mind. In time, waking up several times each night will just become routine and you won't even feel tired the next day.

    2) Look into getting a Continous Glucose Monitor (CGM) as soon as possible. This gives you 24/7 BG readings with alarms when BG trends into unsafe territory, so you can stop worrying pretty much altogether.
     
  7. acjsmom

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    I think you have received some excellent advice here. You are still so new to this. I have to say at even four and almost six months into this, some days I just want to cry and yell, "It's not fair!" Then, I pull myself together and go back to our routine.

    One day, eventually, it will be routine to you. As much as we all hate it, it does become a routine.

    I agree that checking overnight is a good thing. We have always checked our dd at midnight and three. At first, it was on the endo.'s recommendation. When they told us to stop the 3 a.m., we kept it up because our dd drops sometimes between midnight and wake-up.

    As far as the passing out and no one being around, so far, knock on wood, my dd has not passed out at all. She has had some scary lows, too. Your son is 7. At this point in his life, he will probably not be alone. By the time he will be, he will be old enough to know that he needs to be aware of what is going on.

    (((hugs))) It will get better.
     
  8. DsMom

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    Also...you say it makes you sad that your son will deal with this the rest of his life. That makes me sad for my son, too. However, getting to see my nieces deal with their D is very enlightening. As your son grows, and definitely as an adult...he will not be dealing with D the way you and everyone new to D deals with it. He will not be fearing finger pricks. He will not be staring at food worrying about counting carbs correctly. He won't agonize about whether he is giving himself the right amount of insulin. He won't worry all that much about going low (but will be an expert at staying safe!;))...and will take care of highs as part of his day. He will have exercising and sports with D down cold. D will not be on his mind all the time...and it will not be in the forefront of his life. This may be how YOU feel right now, and in the short-term...but that is not how he will live his life with D.

    If I am out with my nieces when there is food around, you can turn around to talk to someone else...turn back...and they have already checked their BG. They look at food and just seem to "know" the carb count of even the most complicated dishes and casseroles. My niece who's had D since babyhood especially...she just has a second sense about these things. (I still often consult her at family parties for the carb counts of some things!) They bolus quick as lightning...no fuss...while they are talking and having fun. Taking care of her D is like breathing to her...she does not really "worry," she does not feel bad for herself...and does not inspire others to feel bad for her either. I'm sure she has days when it is a pain in the butt...but it's usually just a peripheral thing in her life.

    I know this is all a LONG way down the road for you...and your pain now is real and normal. I know that everything I've described is something you have to learn and teach your son. But I hope I can reassure you as someone who's watched someone with D grow up. Your son will deal with this the rest of his life...he will deal with it beautifully. And you'll be so proud...as I know you are today...to watch him put D in it's place...in a small drawer in a tiny place in his life...for a lot of the time, you'll both forget it's there. Not today...but one day for sure!
     
  9. denise3099

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    If you take D out of the picture for a moment, at what point do you stop worrying about your kid? When my were little I'd hear about colleagues kids learning to drive and I thought, oh heck no!! Sleepovers? Never. Sex? Out of the question!!! And the what ifs . . . what if she gets sick, what if she flunks school, what if she never sleeps through the night. Yes it worse with d but if the question is when do you stop worrying, the answer is NEVER. BUT, yes it gets better. It gets better every time she hits a mile stone and the world doesn't fall apart.

    You've been at this a short time. At some point you may even laugh about it--not about D but at D. Like when your kid says all loud, Mom I think I'm high! :eek: And all the other parents look at you shocked. :D Or when you squeeze a finger for a bg test and blood comes shooting out and gets you in the eye! You'll look at each other shocked for a minute then both burst out laughing.

    How about when you go to do a night check and your kid still asleep automatically sticks out his middle finger? :confused: Hhhmm did he just do that on purpose?

    You will both be fine----but not yet. Right now you are worried sick. That's ok too. Soon you'll find something to laugh about.:cwds:
     
  10. MomofSweetOne

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    I completely agree. The CGM is a total game changer, worry reliever, and I wish they'd give them out at diagnosis.
     

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