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Your thoughts...

Discussion in 'Parents of Children with Type 1' started by cmsullivan, Apr 28, 2010.

  1. frizzyrazzy

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    I can't really remember anything that I found insensitive, but I also remember being taken aback by hearing from the nurse that we would know more about this disease than she did, and that were were going to be expected to adjust his insulin all on our own. I thought "woohoo..we have a live one here..nurse expects US to do thsi?? haha"

    I was also told that usually kids with type 1 generally wind up in the hospital at least once a year - usually with a tummy bug/ketones etc. That scared me a kit but she also reminded me that I should remember that the hospital was a SAFE place, to not think it of as somewhere I would go because we were failing. So it was a dual sort of statement which both scared me and made me feel empowered.
     
  2. bisous

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    I had such a positive experience. Seriously. The CDE who admitted us (who dealt mostly with Type 2 adults mind you--this was at the hospital) was so amazingly positive. I truly feel like she helped frame our entire D experience to date.

    She actually gave out very accurate information. She was well informed about treating lows, glucagon, insulin etc. The first thing she said to us, though, was that he will live a long, full, normal life and that he can do anything he wants to. She told us the stories of people who have lived with diabetes for 70 years. She told us of kids who do all kinds of things. Seriously, it was so comforting.

    I'm grateful for her forever. I haven't kept in contact with her since the hospital but I'm considering contacting her again, just to let her know how grateful I am!
     
  3. Jen_in_NH

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    I don't htink anyone told us anything that I thought was rude / insensitive / etc. But, I honestly wasn't expecting anyone to tell me everything was fine, life goes on, etc. I wanted the facts of what we needed to do. My husband and I are both the type of people that want all the facts, make a million plans, and then we'll consider the whole emotional part of things.

    I have never found people telling me "he'll never remember life before D" to be a bad thing - in fact, I think so myself. Yes, it sucks that he isn't ever going to know life without D, but there will never be an adjustment to it either. Counting carbs, bolusing, finger sticks, and changing pods are all just a way of life, not an adjustment to a new way of life (for him)

    Jen
     
  4. spamid

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    We were told there would be a cure in my DD's lifetime, that's what I remember holding on to. My mom overheard the doctor saying the best thing, that I wish he would've told me. He was talking to a nurse, and said "she'll be able to handle it," I sure wasn't feeling it at the moment.
     
  5. roo'smom

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    I don't think that there was anything anyone could SAY to make the diagnosis easier, but I think a visit from a parent and child actually living w/ D would have make me feel a whole lot better. Just seeing a "healthy", happy kid walking into the room would have been fantastic. Nurses, endos, etc. can tell you that it will all become second nature, she can still do anything, blah, blah, blah... to actually see it would have made it more real in my eyes.
     
  6. MAsDad

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    Yeah, our experience at both hospitals the morning of diagnosis was superb. I'm on an advisory board of the hospital where I took MA to the ER at 7am that day in full-on DKA. I was convinced she was suffering from swine flu or meningitis or something. They masked her, and sent her back almost immediately. I went in with her, was met by the charge nurse who asked me first "Is she diabetic?"

    The first actual doctor to see her said "This child is diabetic. I can smell it on her breath." It began to set in that she was showing the signs. I felt horrible. I'd grown up with a type 1 dad, I knew it...the weight loss, constant thirst, fatigue. How could I miss this?? My wife came in after dropping off our other daughter at school and I told her "they think she's diabetic." She cried, I held her, there at the foot of the bed as my daughter fought to catch each breath.

    Central lines, glucose, finger pricks, the works. This ensued until the doctor told us she needed to be admitted for insulin therapy to reduce her very high blood sugar, and she needs to be transfered by ambulance to the PICU at another hospital.

    Within 30 minutes MA was being tended to by the excellent staff in the PICU and we were being advised as to her condition and progress. Our ped showed up and talked with us, introducing us to the endo doc when he arrived.

    No one ever sat us down and "broke the news" to us or tried consciously to comfort anyone but MA. For that I am grateful. She's the patient, not me.

    So no one in the hospital ever said anything or did anything that was anything other than realistic, affirmative, truthful, and sincere. By THAT I was comforted.

    On a side note, my dad, the Alpha Type 1 in my family was heartbroken when I told him by phone what was going on later that day. Being in the PICU visitation is restricted to parents only. Ha! Within an hour my dad was walking through the double doors at the PICU and the nurse just looked at him. I nodded at her and she didn't say anything. Dad looked at me, approached the foot of MA's bed and with a tear in his eye offered her all he could at the moment. "I'm so sorry, hon" was all he could say.

    I had to sit down. Dad had never once uttered anything to me, or in my presence, about diabetes being rough or a handicap or a disability or even anything negative for him. It just "Is" is what he would say. And yet when his prescious grand-daughter lay before him fighting to get her sugars down, I saw the sadness in his face. He thought he was to blame. It broke me.

    Today they share a bond that's unlike anything I've seen before. Over Easter Sunday I cought the two of them winking at each other across the long table as mom rolled out the pecan pie and red velvet cake. They "compare notes" on highs and lows, and she actually asks him for advice on what to do sometimes.

    So yeah, I guess there are people out there oblivious to our God-given condition and it's right to get your blood up about it and educate someone. I tend to leave well enough alone figuring that someone elses ignorance isn't my problem. Of course, my kid hasn't come home crying yet over some comment made by a jackass teacher or coach yet either.

    Be good, love your diabetics, and go fishing this afternoon!!
     
  7. MySweethearts

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    What an awesome doctor!!! I love when doctors realize that parents know some things too. When Luke was dx'd, I also got told " good thing he is young" or " he will not know any different" Well, he is 7 and he does know different. :(
     
  8. Lee

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    For some reason, this thread has been on my mind...and I finally remembered why! We where waiting in the doc's room (me, My oldest, and Coco) when the PA came in with a great big smile, and a sweet sing song voice and said "Yep - It's diabetes"

    And couldn't understand why I started crying.
     
  9. MAsDad

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    OK, now THAT would have pissed me off too. I admit it.
     
  10. Becky Stevens mom

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    Sounds like she took some happy pills or smoked something that made her just bubbling over with giddiness that day:mad: freakin loser!

    I dont remember much of the first day of training. We did meet the endo very briefly and I didnt care for her too much, she just seemed cold and uncaring. The CDE that we were working with was nice enough, she herself had been diagnosed with type 1 3 years before Steven was, she was working there at the time also. The CDE that we've seen ever sense is a saint:cwds: She has always been Stevens biggest champion. Shes a one woman pep rally for Team Steven and Im so very thankful for her
     
  11. hawkeyegirl

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    I'm not sure I remember a darn thing that anyone said to us at diagnosis. The one thing that did make me feel better was that one of Jack's nurses and one of the dieticians that we had at the hospital both had type 1. They were both so...normal, for lack of a better word, that it really helped me to realize that this wasn't necessarily the end of the world, even though it felt like it.
     
  12. kiwimum

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    Our experience was very positive - well, except for the actual D dx of course!

    Our endo very much encouraged us. He went through stuff and then told us it wasn't our fault, we would be able to live like we lived before and that we would have all the support we needed, 24 hrs a day.

    He then spoke more directly to Tyler and told him that he could do anything he wanted in his life and could still eat what he liked.

    But he then said to Tyler that to always remember he is still the same Tyler he always was and he was never to think of himself as Diabetic Tyler, instead he was Tyler with Diabetes. (That made me cry, all over again!)

    And now, everytime we go to an endo appt, the endo tells us we are the experts in D, he is just there to encourage and reinforce what we are doing. He always tells us that we are doing the best we know how and that not to forget we are human.
     
  13. ShanaB

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    Emma has now lived with d longer then she has lived without it so that statement makes me very sad sometimes. However, I can only imagine what parents of older children go through with a dx and in some ways I think it is easier that she'll never know any different. Sad but easier.
     
  14. Noel

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    I don't remember the staff saying anything rude at the time of diagnoses. I remember when we were in the trauma room, with about 20 people running around us in circles, Keith and I hugging and I said to him (Keith), "I never thought I would say this but THANK GOD you have diabetes". He totally understood what I ment but a nurse stopped dead in her tracks and said "what did you say?" Keith then had to explain that he had Type 1 and had for many years, he explained to her that I knew Aidan would be ok, because he was ok and he was living life with type 1 diabetes. I think she got it then...

    I will tell you this though I hated it when people found out that Aidan had d and Keith did too, and they would through out there "Oh he got diabetes from his dad?"

    Whether or not he did or didn't...no parent wants to hear that, Keith always says "Of all of the things a father hopes to pass to his son, Type 1 Diabetes isn't one of them".
     
  15. KellyMama

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    You know, Hanna actually said that to me one day about being dx'd young. I was surprised she felt that way but she said she was kind of glad she didn't know anything different so she wasn't sad to have to get used to shots etc. On the one hand I was sad for her to not remember a life before shots and on the other hand, I felt like if she reached this conclusion on her own, it wasn't necessarily a bad thing. YK?

    As for the dr's and nurses. All but the ER dr were terrific. I still can't believe the ER dr told us she'd have to eat the Atkin's diet for the rest of her life - essentially carb-free . . .ummm type 2 anyone??? She's 3 for cryin' out loud! :rolleyes:
     
  16. Yu235939

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    It's not easy

    I found the staff quite supportive when our daughter was diagnosed two yrs ago at the age of 18 mos. The diagnosis was a shock for us as we did not believe that it could happen to her -- and so young, still in diapers and drinking from a bottle! As my husband is T1 since he was 4, we knew in the back of our minds that she could be inflicted as well. Anyway, since she was so young it was easier in some ways ( she did not want sugary foods at this point, and was oblivious to needles/testing BGs) but it was hard to know when she was low (had hardly any symptoms) and to stay in routine or to predict what she would actually eat posed challenges as well.

    After the diagnosis was confirmed and the original shock, learning how to manage the disease was not too difficult as my husband is type 1, so I knew how to do everything. Only had to learn about more carb counting and figuring out her specific insulin needs. It is hard work still even though we are experienced parents. I really commend those parents out there who had to learn all of this from scratch, and at the same time, deal with all the emotional realizations! Diabetes is a condition -- which, when it happens -- you have no time to sit back and reflect and mourn... You have to quickly acquire the necessary knowledge and then deal with day-to-day life for the sake of your child. Keeping things normal with diabetes is a daily struggle - easier some days than others. I know that when a diagnosis of T1 diabetes happens, it seems like the medical professionals, no matter what they say or do, cannot totally give you peace. And it is even compounded further as you are immediately sent for diabetes education and thus, you are required to push the emotions away. I think I am still struggling with the emotions but I think what really helps is having faith --- and before you laugh I am not necessarily referring to religious faith but just in the knowing that everything will be OK and to take one day at a time...
     
  17. Marcia

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    We were so fortunate that the 4 days we were in hospital we had the same 2 nurses, one nurse's little girl had Type 1. Nothing was sugar-coated, the CDE and nurses were very matter of fact, but so informative. I just think the whole process in the beginning is so overwhelming. At times I was looking for someone to comfort us, and the staff just had so much to accomplish before Ab was discharged. I really wish there was a way we could have met with a CWD parent at diagnosis.
     
  18. joan

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    My son was dx at 22 months of age and we were told the same thing. It did bother me for a long time. Now that he is 17 the diabetes is not a big deal at all. He really doesn't think that he is debilitated in any way. He does "forget to bolus" eat really crappy foods but never gets down because he has d. When I hear of a teen getting this it is so different. It is a hugh adjustment in their lives and some have difficulty accepting. So for us that statement is really true.
     
  19. Kateri's Mom

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    I remember being in the elevator, late in the day of dx (going to the cafeteria with my brother...making me eat since I hadn't had anything since lunch the day before) and i was explaining the little of what i knew to him. There was another person in the elevator and they asked how old my daughter was and I said 8....their response "Oh, that is a good age to get diabetes!" I was like, What???? No age is a good age to get diabetes.....now that we are 18 months in, I get what they were saying but at the time I thought we was rude and off his rocker!
     

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