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Are we expecting too much from our endo team??

Discussion in 'Parents of Children with Type 1' started by polly, Apr 11, 2011.

  1. polly

    polly Approved members

    Feb 16, 2011
    My 5 yo was diagnosed 3 months ago and we had our first endo appt. today. My husband and I left the appt. feeling extremely confused and frustrated by the discrepancies between our CDE and endo MD. The CDE was on vacation when we were dx so we had very little formal education leaving the hx. As a result, we have done everything possible to "learn the ropes" with lots of reading, JDRF activities, CWD technology course, etc. in the last few months. We have been shocked at how our team's recs differ amongst themselves as well as current literature. Here are some examples: We left the hx on shots of NPH and Humalog 2xs/day. I think this was done since there wasn't an educator at the hospital but our CDE made no effort to change us to MDI until we finally insisted on it 6 weeks ago. Our CDE has also said things such as CGMs are "more trouble than they are worth," blood ketone monitors are a "waste of money" and that there is no need to pre-bolus despite the fact that our child is an extremely predictable eater. These were all subjects that we brought up and felt immediately shot down. When we requested her to look at our #s several weeks ago as we had several consecutive lows and had adjusted his #s, she didn't get back to us for 2 days and then simply said that it was fine and you have to learn to "play with it." As far as diet, the CDE advised allowing him to eat as he did previously with careful carb counting. Our endo today advised us to teach our son now that some sugary foods are really off-limits and should be limited even as "special treats." The MD disagreed with many of her recs, but didn't seem bothered by the fact that they were so many discrepancies. What bothered us more than anything is they have completely different perspectives on our #s. One says never go to bed under 150, the other says 110 is fine, etc. Does anyone else have similar experiences? How closely do you work with your CDE? Your endo?
  2. Christopher

    Christopher Approved members

    Nov 20, 2007
    No, you are not expecting too much from them. Their poor advice and unwillingness to work with you would be huge red flags for me and I would start looking for another practice asap. I understand it is often not easy to find another endo, but in this case I think you almost have to.

    You need to be a strong advocate for your child now, with the school, the endo, etc. If you want a CGM, fight for it. It is your decision not theirs.

    Pre-bolusing can be a great tool in managing diabetes, especially dealing with insulin resistance in the morning hours for breakfast.

    I think you will find that as more time passes and you become more comfortable managing his diabetes yourself, you will use the endo less and less. At least that has been my experience.
  3. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Sep 23, 2007
    If you post your general location folks may be able to suggest other endos in the area.

    As Chris pointed out, you need your endo team now more than you probably ever will in the years to come. You should all be on the same page.

    Good luck.
  4. danismom79

    danismom79 Approved members

    Apr 21, 2008
    Our CDE is our management person; the endo is the labs and overall health person. Our endo thinks I have way too many programs in my daughter's pump, but he never asked me why I have them set up that way. So I don't discuss management with him, at all. If I have questions, I ask the CDE.

    It seems like you have formed a lot of your own opinions about what you want/don't want, and have taken the initiative to educate yourself. When you go in armed with info, I think over time you'll be less confused by their conflicting info and will be able to confidently make up your own mind. Your endo team is there to guide and help you, not necessarily to tell you to do x, y, and z. I wish your CDE were more open-minded about some things, but ultimately, she works for you.

    About the #s - you do have to learn to "play with it," so to speak. If you'd already made adjustments, and she was commenting on those, maybe you did a good job!

    And the diet is totally your call. You may decide that some foods are just not worth the result, or you may decide to work around them and figure out how to dose for them. Sometimes it works, sometimes it doesn't. That's when you learn to "play with it." ;)

    If you're really uncomfortable and frustrated with your current team, I see no reason not to try out other endos and/or CDEs.
  5. Flutterby

    Flutterby Approved members

    Nov 11, 2006
    I think you need to look for another office. You aren't happy here and thats going to carry over. If at all possible locate another endo's office. I use to love K's endo, but now, I'm not liking her so much. What keeps me going to the office though is the CDE. The CDE is fantastic and has t1 herself. Often she and I will agree on the changes (if we happen to need some while we are at the office) but the endo will have a completely different suggestion.. I always go with the cde's advice. ;)

    Its important to trust your endo and CDE and have a good relationship with them. Having them talk down to you does you no good, you don't need that. This is what K's endo started to do to me, we are currently seeing someone else in the practice. They should be working WITH you, not against you. Definitely sounds like you need to find another office.

    Good luck!
  6. PixieStix

    PixieStix Approved members

    Sep 22, 2007
    Hi Polly--I am sorry you had such a frustrating experience today at the doc appt. IMO the great thing for your son is that you & your husband are working hard to educate yourselves about the disease and what is available, and already taking the initiative to advocate for him to get him what you feel is best. The comments you posted from the CDE and the doc would have me seriously on the hunt for a new provider/practice ASAP. If changing providers was not feasible, I would clearly state what I wanted & why, but also listen to the rationale of the team when advised differently.

    I was surprised myself how much of a Barracuda I became after my son was dx'd at 5 too...studied and knew what I wanted for him in terms of BG management, pushed the pump/CGM immediately. Not saying this is what everyone should get, just feel the key is to educate yourself, find a medical team that supports the level/method of disease management you desire for your child.

    Glad you have come to CWD, honestly still consider this one of the greatest resources, my other favorite is Think Like a Pancreas. The great thing about this site is, whatever you are encountering, many others have too and you can learn from others' experiences to find what works for you.
  7. frizzyrazzy

    frizzyrazzy Approved members

    Dec 23, 2006
    I think there is a huge disconnect between your CDE and your Endo and it is really THEIR issue that is becoming YOUR issue. It is not appropriate. They should all be on the same page with their philosophy of diabetes management. That said, the 110/150 isn't really a huge different, they're just arbitrary numbers anyway...110, 150, 109, 151, use that advice as "in that general range" and learn to judge based on what's been happening during the day.

    We still use our CDE as our sounding board when things are really bad - I can email her and say "I'm at a total loss" and she'll get right back to me - and that's because we've established a relationship over the years. That's what you'd want.
  8. mom2Hanna

    mom2Hanna Approved members

    Jul 6, 2008
    hmm sounds like my first practice.

    I switced my daughter within 10 wks of her dxs from the big local children's hospital to one 45 mins away. Because I had a problem with NPH/humalog and wanted MDI, because I had a problem with my kid having a lifethreatening life long disease and not even having met an actual dr yet ( she was not hospitalized). Because I was an annoyance with my expecting someone to both answer the phone and call me back the same day.

    Our new practice I love, I email her endo when I need help and she will look at her log and email me back within 24hrs. I love the office staff and we are very happy, they listen to me and they answer the phone!

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