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Did you ever feel like it was your fault?

Discussion in 'Parents Off Topic' started by JNBryant, Nov 15, 2012.

  1. JNBryant

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    It's been 6 months since my son was diagnosed, and I still feel awful about it. I know that it's no one's fault, but when your child was diagnosed, did any of you feel the same way? I remember being at the hospital and having the doctors grill me about my family's health history. No one in my family has any history of diabetes at all. Then when I told them that I had gestational diabetes when I was pregnant with him, they all looked at me with expressions that said ''Yep, there's our answer!''.

    I used to sit up at night crying and telling my husband that it wasn't fair. My son was only 2 at the time, and a sweet little 2 year old boy who's completely innocent doesn't deserve having to carry this disease with him for the rest of his life. I guess it was a combination of feeling horrible for my son and feeling angry that I was helpless to do anything about it. Here I am, 6 months later, and I still have those nights from time to time when I just feel horrible.

    I don't mean to bombard anyone with my sob story. I was just curious to see how you folks felt when your child was diagnosed, and how long it took you to accept it.
     
  2. obtainedmist

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    The first words out of our endo when he came to the ER to see us was, "Nothing you did or didn't do made this occur." I will always be thankful to him for his kind and comforting words. And I really try hard to believe him, though it's so hard to get rid of guilt. I decided to look forward instead of backward and just throw myself into being the best advocate for my daughter. I know your little one is far younger than my daughter at dx, but I just want to let you know that these kids can do ANYTHING (with a bit of planning). I had a lovely conversation with Molly today where she told me that she hardly thinks about T1 anymore...it's just a part of her and it doesn't bother her to do what she has to do to take good care. That was music to my ears! It really does get easier...I think it took me at least 9 months to a year before I felt that life was moving back to a new normal...but in the mean time, please remember to take good care of yourself as well as your son.
     
  3. nanhsot

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    I actually got angry when they tried to link my weak thyroid to this. That's just silly! I started thyroid meds after my second pregnancy because my thyroid was/is sluggish, but I can easily do without my meds and am fine, unlike those with a true autoimmune thyroid disorder on synthroid (I take Armour).

    When they were taking a history they leaped on that, as I had told them we had no history of autoimmune problems in our family. I still believe that actually.


    It really angers me when they try to place blame, like that somehow helps? It's a quirk of fate, a twist of genetics, an environmental problem....we'll never know. It's NOT YOUR FAULT.
     
  4. JNBryant

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    I was too busy being upset to be angry. It just bothered me and I found it amazing that the entire time I was at the hospital with him, they kept prying into my family history. I know they have to, just to rule out other things that have similar symptoms, but then they started asking if he was overweight as an infant, and if I ever overfed him. I guess Children's National is some sort of training hospital because at one point I had about 8 doctors in the room with my little guy who was hooked up to IV's and monitors and I had to sit there and repeat everything over to each of them.

    It was just this ugly and unimaginable situation. I remember getting so upset at one point, I yelled at one of the doctors that was in the room and told them that if they wanted to know what was wrong with my son, they could just go ask the other 4 doctors I had to repeat his story to. It really doesn't help when they try to place the blame. The only thing it does is make you feel like it really is your fault, even though technically it's not. I'll never go back to Children's though. If this ever happens with any of my other children, I'll take them over to Johns Hopkins instead.
     
  5. tiger7lady

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    I struggled with this for a long time. Unlike you I do have a family history of Type 1 diabetes. There has been a type 1 in every generation for as far back as anyone can remember (my cousin, my mom's cousin, and so on). I was distraught with guilt that my bad genes caused this. Then for a while I was in complete fear because all those other family members were only children and I have 2 so I was terrified that it would strike my second child. Eventually (with counseling) I was able to let both of those issues go. There are still days when that guilt comes back a little but I just have to remind myself that it's not my fault.
     
  6. obtainedmist

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    We were told at dx that both parents had to contribute genetically for T1 to happen. That diffused the blame game.
     
  7. DsMom

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    We have a family history as well...but I let go of the guilt long ago. When you look at it, we as parents often pass on the illnesses that befall our kids when they become adults. Heart disease, high blood pressure, depression, tendencies toward obesity, certain cancers, and many other conditions can be genetically linked (although of course there are ways to prevent some of them). Our kids outlive us...and we usually never see what our genes may have done to them as older adults. In my case, I've sadly already seen what my genetics have done to one of my children. In your case, perhaps it's not genetics at all...much of T1 is still a mystery. However, knowing what I know, I would still choose to have my son in this world, and I know he would choose to be here.:cwds: You've given your child the gift of life...but we also give them not so nice things as well...it's unfortunately part of the package sometimes. When your child becomes an adult, if his own child has Type 1 (or any other condition in your family's history), will you blame him...be mad at him? Of course not. You may be sad...but you will be thrilled with the life he created. Try to lay down your guilt.:cwds:

    There is a grieving process after a dx...much as when a loved one dies...and you, like all of us have, are going through it. If you are familiar with the stages of grieving, such as denial, anger, bargaining, etc...you may see your own process since dx. These are natural reactions...but are stages that you should eventually pass through in time. If you find yourself stuck for months on end (and 6 months is still early days as far as I'm concerned), you may want to consider talking to a counselor. However, from what you describe, you are just going through the process of accepting this and mentally integrating it into your world. It takes time. But you will find that these bouts become fewer and more far between...I think it's been at least a year since I've had a really "angry at D" day.
     
  8. obtainedmist

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    Couldn't have said it better! Thanks for this amazing post!
     
  9. selketine

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    I agree with others - we all pass along our genes to our kids and no type 1 in my family but there is history of autoimmune issues. I think it is just random luck of the draw that he got type 1.

    I had gestational diabetes too - with my first child - who does NOT have type 1.

    I don't think I did anything to cause him to have type 1 and neither did you.:cwds:
     
  10. cdninct

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    Luckily, no one tried to pin the blame on us when DS was diagnosed (although a few months later my family doctor insisted that I must be wrong about having no family history of d, as it is a genetic disease).

    I just wanted to say that, for me as, I think, for many, 6 months is a really hard time. You aren't raw or madly trying to learn the basics any more, but things are not perfect, as you might have pictured them being at the 6-month mark. On top of that, you are now experienced enough to know that you will not be able to make them perfect. Plus, you are tired. All of that led me to a period of struggling with d at a time when I thought that I should be past that. It passed, though, and I don't think I've felt that bad since then. Hang in there!
     
  11. JNBryant

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    Thank you for all the support. I think that at this point, it's not so much blaming myself as it is just feeling plain horrible for him. For a 3 year old, he does so well with it though. He never complains when I give him his insulin injections, and he's always excited to do bs checks because to him, it's like a surprise every time. Although I have learned the basics, it frustrates me a lot of the time when I can't keep his numbers consistent. I think that what bothered me the most, and still does, is that when he was diagnosed, all the doctors would talk about were the long term complications.

    I had never given it much thought because diabetes has never reared its head in my family before. When they told me about what could happen in the long run, I was completely horrified. Add to that my child only being 2 at the time, and it was like a recipe for depression disaster. I'm doing better at this point now, but I still have my days. Our pediatrician scheduled a follow up visit about a week after I brought my son home, and he told me that it's becoming more and more common to find people with T1 who don't have a family history. Right before my son was dx'd, he tested positive for strep. He told me that the strep was most likely what triggered the disease to ''activate'', and even if it hadn't then, it would have eventually. Even if it isn't always genetic, all the more reason to find a cure seeing as though they're starting to see more and more children and teens surfacing with T1.
     
  12. selketine

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    William was dx'd when he was 26 months old and in the hospital they gave me the Pink Panther book one night - really LATE at night when I was sort of lying there not able to sleep. Of course I turned right to the chapter on COMPLICATIONS - and read it - and cried like a baby. Fortunately William was asleep!

    Then I think there was a section on TRAVEL and I read that next cause - I figured I needed a nice vacation after reading that first chapter - LOL!:p

    Anyway - the doctors should not have laid it on so thick about complications at that point of diagnosis. I did it to myself so I could just "get it out of the way." So consider that now you've gotten it out of the way you can look forward knowing that the care available now is excellent and will only get better. William was actually asking me about "life expectancy" for people with type 1 this week (not sure WHERE he got on this topic) and I explained to him that his life expectancy is normal with good care - but statistics can include people with poor care, people with type 2, etc. so if he reads or is told something he has to be careful to see what is factoring into it. It is definitely an interesting conversation to have with your 10 year old!
     
  13. DsMom

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    You may need to adjust your expectations of the word "consistent.";) If I have a day where D behaves most of the time...I am thrilled. If I have a string of days...I feel wonderful. What I "expect," however, is to see a high or low almost every day. Not super high, or super low...just a number I am not thrilled with. In time, you learn to "hrummph," treat or bolus as necessary, and go on with the rest of your day.

    That the doctors focused on complications at dx is just plain mean as far as I'm concerned.:mad: You have enough to worry about right now. Your son is 3. Complications, if any, may be a lifetime away...and, with good management, you have every reason to hope they won't happen. I tell newbies this a lot...but I have an adult niece who was dx at age 2. She is now a happy, healthy mom of 2 young kids of her own. She went to college, fell in love, became a teacher, traveled internationally, and got married...a wonderful life so far. She is also complication free. She had one small problem with her eye...which was quickly treated with lasers. You have to remember, in addition to the improving management of D...there is also continuing improvement in the treatment of potential complications. The laser treatment of my niece's problem was not available when she was 2...just think what will be available by the time your son grows up.

    I also agree that 6 months post dx can be a hard time in general. You are out of "survival mode" and maybe taking a deep breath, looking around, and feeling some feelings you may have surpressed in the past crazy months. I know that happened to me. I got really emotional around that time. It is hard...but it will pass.:cwds:
     
  14. Connie(BC)Type 1

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    There's family history on both sides of my parents families, more prominent in Mum family, her father being the last Type 1 before I was dx'd. In those days, it was told to us, 2nd gen 1 in 5, I fit the ctiteria for our family, but no one since has been dx'd with either type, except mt dad on his deathbed AFTER surgery, triggering it. He was dx'd with Type 1 @ 77
     
  15. kimmcannally

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    Yep. Jackson was in various medications for years, trying to get control of his anger, oppositional defiance, etc. Last thing we had tried was Risperdal. He was on it about two years and I didn't worry much about the possible complication of it causing "high blood sugar", I was more concerned about it being able (rarely) to cause him to lactate! But his behavior was so bad I was willing to risk it.

    After he was dx with T1, I was told it was *possible* that the Risperal "burned out" his pancreas, causing it to produce so much insulin to keep his BG down. (if it was even causing him to have high BG in the first place)

    So, yep, I put a lot of blame on myself, but the bottom line was I did not know it could maybe, possibly, rarely trigger T1. And even if I had known, since it was such a rare possibility, I probably would have put him on it, thinking it would never happen anyway.
     
  16. JNBryant

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    I guess that there are so many different things that could cause it, it can be hard to pinpoint a real reason sometimes. I went in today for a doctor's visit with my OB for my 16 week visit, and I told him what had happened with my son and his dx with T1. The first thing he said was 'well, I remember you having gestational diabetes with your first, but you didn't have it with your last child, did you?' Apparently, he seems to think that's what caused it as well because my oldest has it but my youngest doesn't (keeping my fingers crossed). But it's really a toss up if you think about it. There can be a mother and a father who both have T1 and their children never wind up being dx'd with it. Or in my case, there can be no family history but somehow it happens. I just hate all the finger pointing. You'd think that doctors would concentrate more on giving you helpful information and guidance rather than to play the blame game.
     
  17. Marcia

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    We passed on some pretty crummy genes as far as autoimmune diseases, but we also passed on beautiful blue eyes, flaxen hair, wonderful musical abilities, and have provided a nurturing home environment that allows her time to express herself through music and art. It has been almost 6 years since diagnosis, life has not been all rainbows and unicorns but we spend less time focusing on D and more time just focusing on life. You may need counseling to help you work through your grief and guilt, your little one will take his cuesas far as living with D from you. Everything is harder in the beginning, but it will get better.
     
  18. DsMom

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    I do think doctors are just hardwired to try to find the reasons for things. In their minds, it may not be blame...just scientific inquiry...and they may not be empathic enough to understand how their "reasons" sound to grieving parents. They want to know why things happen...and maybe figure everyone else is interested too.:rolleyes:

    Even if my family did not have the history of T1 that it does...I wouldn't give 2 figs for WHY it happened. Knowing why doesn't change anything for us...unless the knowing why could lead to a cure or prevent my other kids from getting it...which it doesn't right now.

    It's after the fact now, but if any other doctor tries to decipher the "whys" for you...I would just politely (or not so politely!;)) point out that the whys don't interest you and only serve to make you feel worse if anything. What is done is done...and you just need their support and help now...as you pointed out.
     
  19. cdninct

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    Ridiculous! I hope your OB does a better job with the baby stuff. He should probably limit the discussion to things he knows about!
     
  20. sisterbeth43

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    What made me feel guilty was my newly dx'd type 1 dd saying to me in the hospital that she thought God gave her diabetes so that I would take better care of my Type 2. She wasn't mad about it, just very honest. She was 13 at the time. And I do now take much better care of myself.
     

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