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Your thoughts...

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

  1. cmsullivan

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    I was just thinking earlier about when Leland was dxd and what some of the nurses, dr's, and CDE's said to us in the hospital. I'm sure it must be very difficult for them to try and comfort a disraught mother and some how make us feel better when we have been given the life changing information that our kids will have to live with D the rest of their life. Some of the things that they said though really irritated me and didn't help so much to make the situation feel better. Like; "its good that he is being dxd so young, he'll never know anything different" :( That phrase does nothing but make me depressed. So what things did your Dr's, nurses, cde's etc say that weren't all that comforting? What kind of things do you think they could have said instead that would offer some sort of hope/encouragement?
     
  2. Lee

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    My endo said that when we leave the hospital, we would know more about this damn disease then every other doctor and nurse in there...

    Not very comforting, but you know, he was right...
     
  3. nanhsot

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    I honestly wished someone would have said that to me, as it was I felt like I was thrown into the ocean without a life jacket. To be told that soon enough I WOULD know so much might have helped. Probably not though...
     
  4. Amy C.

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    I am not sure there is they can say that will be a comfort.

    Now that my son is a teen, I can see the benefits in being diagnosed young. He doesn't know any other way and this helps him to learn the routine.
     
  5. MAsDad

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    I guess we didn't really sit around looking for sympathy or someone to make us feel better. Life isn't fair. The tough get tougher. I mean, what would it have taken to make you feel better about it? Our endo did say that he's convinced that in the next 15 years today's insulin therapy for diabetes will be a thing of the past. That was encouraging, but still, we didn't need sensitivity from nurses or doctors. What we needed was direction from the pros on what to do from here on out. We don't look for or expect special treatment or for anyone to be more kind to MA because of her diabetes. I don't expect or tolerate rudeness, but that's got nothing to do with her health.

    I read on this board often about insensitivity from people who just don't know about diabetes, or who might not think about the condition. Who cares really? How does that impact your life or anyone elses?
     
  6. liasmommy2000

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    I don't recall anyone saying anything insensitive at diagnosis. Everyone was very understanding and helpful.

    The only bad part was someone messed up when the pediatrician on call ordered her transferred to another local hospital as he feels they provide better D education and it was a weekend so the endos office was out. We knew nothing about being hospitalized as our only experience prior was when I had Lia. They transferred her via ambulance and she was supposed to be a direct admit to the children's unit. But for some reason they took us to that ER even though we had already been through the ER at the original hospital. So we had to go through all sorts of questions again and it was another several hours before she was settled in a room and could sleep etc. The pediatrician was ticked when he found out. We were so shocked by the dx that we never really questioned it other than being annoyed by answering the same questions over and over.
     
  7. cmsullivan

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    Its not about wanting sympathy I was just curious what others thought about what was said to them when their kids were dxd.
     
  8. liasmommy2000

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    I don't see people asking for sympathy just not liking insensitive/thoughtless comments. There's a difference IMO. As for your last paragraph, well, yes, it does piss me off when I hear about people who are upset because someone told their child they wouldn't have D if they had eaten better etc.
     
  9. CADMOM

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    Our cde told us at diagnosis that sometime in Colin's life we would find him unconscious.......After his 5th year of diagnosis this sort of became true unfortunately......He had two seizures a month apart due to low blood sugars...Until these seizures happened I thought no way was this going to happen to my child......
     
  10. nanhsot

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    Things my son found comforting: "a cure is on the horizon"..."you can BE anything you want"..."you can EAT anything you want".

    Things I wish were said to me: "you WILL know what to do in a very short time and you will feel in control of life again"...."you will not wake up thinking about blood sugar for the rest of your life!"....

    Honestly though, when I think back to those days and the sheer amount of information tossed at me, I doubt there is anything that would have stuck in my brain anyway. I left with the basic information (how much insulin at night...didn't even know what basal meant....how much insulin with each meal...how to test his blood sugars), weeks later I dug out the information and truly saw that they did equip me with much more, my brain could only retain so much at that time.

    My lifelines at that time were not medical professionals, they were the email friends who supported me, those living the life.
     
  11. Michelle'sMom

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    I think for most, it comes down to being put in a situation where they want to offer comfort or encouragement but aren't sure what to say.

    We chose not to stay with our original endo, for a lot of reasons. I'll give her & the entire team credit though. They were very supportive & offered a lot of encouragment.

    Our biggest complaint concerned the PA we saw in the ER. DD was absolutely terrified, never had a blood draw or been in the hospital before. Before our family Dr even arrived, the PA got right in my daughter's face & told her that life as she knew it was now over. She had just turned 11 two weeks before. That's definitely not something to be telling a child, IMO.
     
  12. MAsDad

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    My experience may be different then. Not to be insensitive though...lol.

    I did cringe the other day when I overheard MA talking to our neighbor who's kids she was going to babysit on Saturday night. The dad said something like "so how are you feeling these days?" and was asking her about her routine and all. MA said "you know, it's ok, I just had to get used to some changes in my daily routine, not big deal you know?" His reply was "I don't know how you do it, I mean, needles? Yuck!" I thought to myself hey wtf is that supposed to mean? Needles? Just seemed sort of demeaning, but then I got over it because the guy was just making small talk and didn't mean a thing by it.

    So, forgive me if I sound maybe less than sensitive, it's because I'm not very. I grew up around this condition, so I wasn't surprised when she was dx'd nor was I surprised to hear some of the silly things people say.
     
  13. StillMamamia

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    I'm with you here. I don't like hearing that phrase. Maybe it's better for the kids to be dx very young, because that's all they'll know, but how is that comforting? It surely is not for us, but it also will not ensure the kids dx at young ages won't face sadness or burn-out at some point.

    Honestly, nothing anyone could have told me then would have comforted me. The pain was unbearable. I was just very very relieved he didn't die.
     
  14. cmsullivan

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    No worries, it was a very new thing to me. No one in my family has D, I'd never really known anyone who was D, esspecialy a 15 month old! So it was all pretty overwhelming and heatbreaking to me.
     
  15. Gracie'sMom

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    I get what you are saying, I don't know if they can say anything that will truly comfort you. But at least they were trying. Although NO age is good for diagnosis, after watching a young teen in our class with the dietician about 2 weeks after diagnosis who was totally struggling with the diagnosis and being "different" than her friends, refused to tell any of them, wouldn't wear an ID bracelet, etc. and then looking at the parents of the two-year-old who couldn't tell them when they were low, I did look at my then 7-year-old daughter and thank my lucky stars that she was right in the middle and during the class she understood everything but none of it upset her.
     
  16. NatBMomto4

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    The best things that were said to us came from our endo, who we are VERY happy with:

    She asked my son if he had any questions (this was on the day of dx,by the way). His first question was "Can I still play sports?" Her answer was "Absolutely yes, in fact I insist!" His next question was "How long will I be out of school, because baseball tryouts are next week and I REALLY want to be on the team." She told my son he should stay out the rest of the week (it was only Monday), but she PROMISED he would be at those tryouts the following week. She went on to explain that although Diabetes SUCKS (and yes, she used that word), it is NOT a debilitating disease, it is an INCONVENIENT disease. She said she encouraged him and all of her patients to continue to live their lives as they had before dx, including the way they ate, but to "add D treatment" into your day.

    Not only was the smile on my son's face the first one we had seen all day, which made us feel so much better, my son WAS at those baseball tryouts, and he made the team as starting catcher! D hasn't slowed him down one bit!!

    Most of his day of dx is a blur - but those encouraging words from our endo made an extremely difficult day seem a little bit less difficult and overwhelming.
     
  17. chammond

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    I think when we see someone struggling with anything, many people feel the need to say something to try and make someone feel better. I know at one point or another in my life I have probably been guilty of it. I think even for medical professionals who "see" people living with this daily, it is entirely different to live with it. I get what you are saying about "they'll never know any different" because logan was dx'd very young also. I even had myself convinced of it in the beginning, and then I realized that he would know. He would know that his brother doesn't have to have shots or finger pokes, his brother doesn't have to be woken up in the middle of the night for low bg to have a snack.

    Recently an acquaintance of ours' daughter is in the midst of a T1 diagnosis. I have reached out to them, and if I have learned nothing from our experience it is that there is nothing I can say to make it easier, just offer support, let her know that it will be okay, and pass on some of the knowledge I have gained in the process.

    I think the one thing we have to remember is that although a lot of people will make stupid comments, most really do have good intentions. They cannot know what you and your daughter go through on a daily basis. Sometimes we have to just see the good.:)
     
  18. Lee

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    Yeah - we made it 3 1/2 years without a seizure - now she has had 3 in the last year...
     
  19. AlisonKS

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    doctors and nurses were not comforting, actually very rude. One asked if I felt bad that I gave my child diabetes after he found out it runs in my family. A doctor in the PICU told me my son has diabetes because of his lack of vaccinations (I tore her a new one, was in the middle of the night by the time we got there and I just walked in because they wouldn't let me be there when they put a central line in). One nurse told me how he understand what we are going through cause his kid had rotavirus.
    But after a few days when he was feeling better we went to a diabetes class and the CDE was awesome. She explained how easy it is to miss the signs, this is how we'll make life work, etc.
     
  20. cmsullivan

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    I would have been really mad too if someone dared mentioned my sons lack of vaccinations :eek:

    The PICU didn't let us in either when they were doing the arterial line (they didn't even tell us what they were doing!!!!) I understand the whole sterle feild thing but I could have at least been made aware of what in the world they were doing, kids shouldn't have to EVER be separated from their parents, esspiecaly during something so emotionaly exhausting.
     

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