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Sad hospital story

Discussion in 'Parents of Children with Type 1' started by mom2kenny, Nov 8, 2008.

  1. mom2kenny

    mom2kenny Approved members

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    While in the er for myself(OT) the treating doctor and the nurse were both type 1. The dr has a pump, the nurse mdi. I also ran into an old high school friend who was ther with her 27 yr old daughter. Her d has been type 1 and celiac, for 18 yrs, The mom told me that her dd really rebeled around the age of 13. She said she did not take good care of her d, and ate whatever she wanted behind her moms' back. She now has neuropathy in both her feet. They were admitting her. I don't know anything about celiac, but she said that the food doesn't digest and they have to scrape out her stomach? The girl was really crying and i felt so bad for her. I asked the mom if she ever thought about pumping(because her #s are not good) and she said her dr would not let her until she learned to control her #s on mdi. It is so sad. I am really hoping that kenny doesn't rebel against having d. I really wanted to bring the daughter home with me and try tto help her.
     
  2. Alba37

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    Aw that's such a shame. I'm also hoping my son doesn't rebel too, he's so sick of having diabetes. It must be every parents worry.

    There was a very sad story here in the UK last week. A girl was bullied at school and stopped her insulin. She did eventually get back on it, but complications set in and she died.

    An art exhibition has opened in her memory.

    A x
     
  3. buggle

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    Alba,

    Do you understand the bullying there? The adults are the most gracious, wonderful people I've ever been around. But so many of the kids are bullies and yobs. It just doesn't make sense. :(

    One my best friends lives in Glasgow. :)
     
  4. Darryl

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    Excuse me, but what the **** is that? A doctor not allowing this girl a pump unti her #'s are good on MDI?

    That's like saying "I won't allow her to take algebra until after she gets an A in calculus".

    Not only should the mom consider pumping, she should get a lawyer and sue the doctor for malpractice.
     
  5. clb1968

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    So true, I told my doctor I wanted to pump, he said ok, the he would do whatever was needed to get it going. I had already reseached some online and knew I wanted the minimed one. If he had said no, I would have a new doctor.
     
  6. Darryl

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    This story makes me so angry I would sue the doctor myself if I knew his name.

    Here he has a young patient, who is rebelling against D. Did he ever consider for a moment that it
    might be because she had to take shots every time she ate a meal? Some kids are fine with
    shots, I know, but I'd bet that a lot of kids are not. Did it ever occur to this doctor that trying a pump
    might solve both problems - better control and being able to eat without sticking a needle into herself?
    No, evidently it's better to stay with the control freak approach - no pumps allowed until you prove to
    me what a good girl you are.

    Sorry if I sound angry about this story - I am.

    ETA - about the celiac question. Yes, celiac causes all kinds of digestion problems if not treated, but
    a gluten free diet is essentially a 100% treatment. If the girl was not aware she had celiac, or
    ate food with gluten nonetheless, she could have the problems that were mentioned. The good news
    is that in children with celiac, most of the time damage fully repairs itself 1 to 2 years after sustaining
    a gluten free diet. It is more problematic in adults who have gone decades with celiac not knowing
    that they had it, and even then a GF diet will result in repair of most of the damage.
     
    Last edited: Nov 8, 2008
  7. Zac's Mom

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    I know of a 20something girl (mom) that her #'s are so crazy her Dr. won't put her on the pump for a year. She has used like 5-6 glucagons in a week!
    If she feels herself dropping she will just give a glucagon. She doesn't quite
    get the jist of things. She is a smart woman but just not about taking care of herself. She see's nothing wrong with using glucagon so often- she will use it for 80"s reading- to keep herself from dropping more. Instead of treating with juice or something else.
     
  8. lynn

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    My mom was telling me a few months ago about a young lady that we babysat when she was little girl. She was diagnosed when she was 13 (after she left our home daycare). She didn't take it well and it resulted in a lot of eating problems for her. The fighting with her parents over how her d was managed turned into a lot of rebellion in other areas of her life.

    She ended up having two children with a crummy guy who is now in prison. She had to take the kids out of state to protect them from him until he finally ended up in prison. She doesn't take care of herself and therefore can't take proper care of her kids. Her parents helped and helped and helped....

    Today she is living in a homeless shelter and her parents have guardianship over her kids. She is dealing with the complications of her poor diabetes managment. She still won't/can't take care of herself. It is just so sad. A pump isn't what she needs right now. She is way beyond that. She needs (and has received) therapy.

    After my mom told me this story (she ran into her mom in the grocery store one day) I just fell into a pit for a few. Then I thought about how much better things are for our kids than they were for her. She had a couple shots a day. She had to eat a set amount at a set schedule every day no matter what. She couldn't sleep in like every other teenager in America because she had to get up and eat breakfast. She didn't have any flexibility. Eating is such a basic part of survival that it is really screwy when we lash out against eating. It seems to me that our kids on MDI or pumping who can eat (and live) like the rest of the family will be unlikely to end up in the position of this girl. Or the young lady in the original post. Maybe it is wishful thinking. I hope not.
     
  9. ToddsMom

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    The endo tried to pull this crap on me, and I wasn't hearing it exactly for the reasons you described.:mad: I made the next appt with the nurse practitioner and she agreed to begin the pump therapy, but I was fully prepared to find another doctor.
     
  10. funnygrl

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    Pumping's not going to help if the main issue is compliance.
     
  11. emm142

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    Pumping can be really dangerous if the issue is non-compliance. It is easier to get into a severe high situation a lot more quickly on a pump if the insulin is stopped, because it relies purely on rapid acting insulin.
     
  12. ToddsMom

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    *I* feel it is not the doctor's place alone to decide. I feel the decision should belong to the person paying the consequences. Mine told me the risks and I listened carefully, and still chose to go the pump route. In my situation, it has been a life saver. My son is so relieved to have the pump, and is so grateful he is really trying hard to do things right. I keep a close eye on him anyway, and if at anytime it seems to not be a good thing ... we can always go back to MDI. Right now though, it seems to be a good thing, and with the pump, the non compliance has become a non-issue.:) (which is what my gut was telling me would happen). If it does become an issue, then he's handing it over.
     
  13. Alba37

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    Hi Buggle,

    Sorry I didn't make that clear. It was the other children in school who bullied her, and because of that she stopped taking her insulin.

    Yes, there are many lovely people around, ;) Where in Glasgow is your friend? I'm in the west end. Athough I'd rather be in Colorado! :D

    It's so sad, that some (easpecially young) diabetics don't take care of themselves for whatever reason, it's really heart breaking.

    Best wishes from Glasgow,

    A x
     
  14. Darryl

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    I think that the compliance issue could be because of the shots. A lot of people think that
    shots are nothing at all, but honestly, if I was a teenager and had to take a shot whenever
    I had a bite to eat, I'd probably be somewhat noncompliant too. The pump make it SO easy.
    Just a little remote control command and you can eat anything, anytime, anwhere.

    So I believe that this is a chicken-and-egg problem, and that ANY child with compliance
    problems on MDI should be prescribed a pump as it might solve the problem.

    It is true - pumps do not provide the basal security of a Lantus or NPH shot. If the pump
    site goes bad, BG could go high quickly. If that is the least bit of concern, the answer is
    to stay on Lantus for basal (or most of the basal) and the use the pump for boluses. I
    think this is called the untethered approach.

    No matter how you cut it, a teenager not complying with MDI should be offered a pump.
     
  15. emm142

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    I don't think most non compliance is because of the shots, although I might be wrong. For me, the reason for non compliance would be because however hard you try, it can never be perfect. I suppose the pump, by making things SLIGHTLY closer to perfect, could help this.

    But I also think that for most teenagers it's about being "different". And wearing a pump could be seen as different, so a non compliant teenager might just take it off, thinking "it's only a few hours.." but in a few hours, things can get pretty bad on a pump..

    I think it really depends on the individual.
     
  16. Darryl

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    Emma,

    That's certainly a good perspective.

    My question is should a doctor prohibit a non-compliant patient from using a pump, just because they are non-compliant on MDI? I think it's worth a try to see how the pump goes, even if it's as simple as a 1-week trial under close monitoring. On the small chance the the girl in the story above would have been more compliant if she did not have to take shots with each meal or snack, isn't it worth a try?
     
  17. GAmom

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    If her numbers are problematic because of her condition - digestive issues then it's possible that her bg's would improve on a pump because she would be able to do extended boluses. It could be the MDI were making it worse. It seems I've read a few post of celiac kids who took a long time to digest their meals. that would take a lot of tricks and practice to compensate, best served with a pump.
     
  18. funnygrl

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    I think much noncompliance is related to denial. That's a very dangerous situation to start a pump on.
     
  19. Pammers

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    This makes me so sad. Pumping has totally changed Joey's life (and mine too!)

    I had to ask 3 times, but the last time I just said. I want to start Joey on the Animas pump. Get me started - now.
     
  20. deafmack

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    I feel sorry for the girl. Why should she have to "jump through hoops" to start pumping. That is just ludricous. I think it should be up to the girl if she is an adult and up to her mother and her if she is still a child. I just think it is ludricous that one has to pass some sort of test or requirements to start pumping.
     

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