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Don't be limitied by what you where taught by your "D" team

Discussion in 'Parents of Children with Type 1' started by mmgirls, May 8, 2013.

  1. mmgirls

    mmgirls Approved members

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    I don't know exactly why I feel like I need to post this.

    Many things over the last few months that i have read from others and my own feelings that are made in reflection of the last 7 years, I guess.

    I left the hospital with my 13month old with 'carb choices" and free snacks with the hopes that she would go into a honeymoon. It sounded to good to be true, and it was; my daughter never did go into a honeymoon and that just prolonged the time that I felt that i was subject to what the meter said.

    We got to the pump as soon as we could then; 6 months as per insurance. But it was my want and need to feel more in control, rather than her endo trying to get control of her numbers that has taught me the most.

    The disparity in care is great. And you need to learn how to be not only a navigator of your childs care but also an advocate for them in the most simplilest of tasks.

    When I finally found this site, more than 2 years after Dx it was like a river of information that was overwhelming at first. I was scared by what I did not know. I was intimidated.

    BUT, I have stuck it out no matter what. Because even a view that i do not follow is a veiw that i need to consider and navigate my daughter thru.
     
  2. Anyelday

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    We are almost 6 months in and on MDI- looking at pumps- and I am often in awe when I read posts here. It often seems like some people know so much and I know so little. I just keep coming and reading and soaking it all up. I always think we do the best we can with the information we have at any given moment.
     
  3. cdninct

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    Agreed! It makes me really sad to read about people struggling with problems that arise from doing things the way their endos told them to do it. Of course, some parts of diabetes care are non-negotiable, but there almost always seem to be multiple ways of handling things that so many are never told about. Thank goodness for forums like CWD!
     
  4. skyblufig

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    Yes. I think they try to keep it as simple as possible at the beginning (like it ever could be!) so as not to overwhelm you (again, hahaha), but then they sort of let you find your way as time goes on. I know most of the changes we've made in ds's daily routine were initiated by us.

    I think a lot of this comes from the diabetes medical community trying to hit on a way to manage T1 that's attainable for most, but not necessarily perhaps the best course to keep people healthy -- really healthy -- for life. For example, they let you ride the numbers higher when they're younger. However, look at what they now know about the general population and heart disease/high blood pressure/cholesterol: that stuff begins in childhood. Why would the possible complications that can come with being diabetic be any different? It's fascinating to me all the way around. I always go to ds's appointments with about a million questions.
     
  5. shannong

    shannong Approved members

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    I totally agree with all of what you said. But I think that there is something fundamentally wrong about the sugar-coating spin that endos and nurses put on it in the beginning. At least that's the way it was for us. I mean I would rather hear the complete and honest truth about how difficult it is to manage diabetes and that there are long term consequences as well. I would rather hear this upfront. I know that the long term consequences need to be kept in perspective. And frankly, I try to stay as positive as I can in the face of diabetes, so I just don't think about it. But I have read enough to know that I want to do everything I can to manage his diabetes. And that's the thing - I read on my own enough to motivate me to advocate for my son and manage this disease to the best of my ability. So little of this info actually came from my son's care team.

    I was reminded of this experience when I recently had to attend the hospital's pump information class as a requirement for getting my son the pump. The nurse leading the pump class said that we would have to increase our blood checks from 4x a day to 6x a day for the first 2 weeks and that we would have to do a 3am check. Many of the people in the class groaned about this - so the nurse reassured them that the 3am check (and the increased number of checks) was only for the first 2 weeks on the pump and then they would no longer have to do them.

    So here we go again - it seems that the hospital approach is to "reassure" parents that this disease will somehow be easy to manage by saying things like night time checks and increased monitoring only needs to be done in the first 2 weeks. Why? Why not provide actual data based on scientific studies that show that increasing blood checks helps reduce a child's A1C and the potential value to doing night time checks? I was told in the beginning not to do night time checks because my child will surely wake if he goes low. Well, 10 months later, I have caught many lows while my child is sleeping and he has not remotely looked like he was going to wake from them. I'm not saying that there is any "right" number of blood checks to do or even that you have to do night time checks. But at least provide the facts and then let parents decide.

    Anyway, I came away from that pump information class with the feeling that their is something very wrong about the way information is conveyed to parents.
     
  6. Momontherun

    Momontherun Approved members

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    Well said. I think living with diabetes and practicing medicine is two different things. I can't imagine only 4 checks a days. I know some people go to diabetic Ed and their endo appt and that is their only resource for support and in managing diabetes. I am an information junkie and need to overanalyze everything. I want to proactive and provide the best care possible. and the Diabetic team is partners but my family's effort and self education is what matters most to make this journey managable.
     
  7. wilf

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    Except in unusual cases, by the time your child has had diabetes for a year you know far more than anyone else ever will about how to manage your child's diabetes. :cwds:
     
  8. skyblufig

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    Yes! It always blows me away how many people don't do overnight checks! While they never sugar-coated the amount of management this was going to take -- and I'm glad they didn't at our hospital -- our first nurse did give the ok to stop doing overnights about 1 month in. I think I burst into tears when I got off the phone with her because ds does NOT wake up when he goes low at night. I do feel lucky though that when I brought ds into the hospital originally, we had excellent timing: the on-call ped endo is the department director and has been doing research for over 30 years, both at Mayo and now at Lurie here in Chicago. He was able to spend a ton of time with us over the few days ds was in hospital and he himself has a few relatives in their 80's who have been managing their diabetes very well and don't have any complications. But he did emphasize that the reason they don't have complications is that they test-test-test and have always kept a very tight leash on the bg. He was one of the first people to tell us outright that it's ok to get our land-legs, so to speak, then keep ds lower (in the non-d range) rather than higher, even though he's so young. It made the whole experience of diagnosis not exactly easier, but slightly more digestible, if you kwim. ;)
     
  9. heamwdevine

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    Completely Agree!!!
     

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