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Endo-less?

Discussion in 'Parents of Children with Type 1' started by Mommaof7, Jul 21, 2007.

  1. Mommaof7

    Mommaof7 Approved members

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    It appears as though we will be endo-less, and I will be relying heavily on my CDE. Is anyone else in this position?? The biggest problem is that there are only 2 ped-endo's on the entire island, only one being on our insurance and I've not heard good about either of them.

    What do you get from your endo that you don't or can't get from your CDE?? So far, she's been my lifeline and I assumed that our endo would become that person, well that's not gonna happen.

    Anyone else in the same boat? Anyone on Kaiser????
     
  2. Amy C.

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    An endo can write prescriptions -- the CDE can't (I think). The endo does the physical exam where our CDE looks at the blood sugar patterns and makes suggestions. The endo interprets the labs and writes prescriptions for further tests.
     
  3. Mommaof7

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    k, our CDE can write prescriptions and has been interpreting the labs and ordering the labs, so good thing, LOL
     
  4. liasmommy2000

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    While I like our endo, I really do feel the CDE (in our case) is the really the go to person for information, support etc. The endo does see Lia every three months and gives her a good physical exam, discusses her numbers, A1C, asks how she feels about stuff etc. But overall the CDE is the one we really discuss the nitty gritty stuff with. When our endo was hesitant to put Lia on Lantus, the CDE pushed for us. Funnily enough though after that step, the endo was the one who asked me if we were ready for the pump. I told him at Lia's last appt in May that we were seriously considering it. I haven't spoken to him since, and here Lia is pumping. The CDE (well and the Animas rep and nurse) were the ones who set us all up with it and the training etc. And actually I think they write the prescriptions too...
     
  5. allisa

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    theres another post here from a mom in Alaska.....who appears to be endo-less as well....you two should chat !

    http://forums.childrenwithdiabetes.com/showthread.php?t=6074

    That is really tough....to live in what I imagine to be very beautiful places...Alaska & Hawaii....yet not have the services you require......
     
  6. caspi

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    When we were initially in the hospital when Cameron was first dx'd, we saw the CDE every day for a few hours a day. She also wrote the prescriptions for us. We did see the endo, of course, but it was the CDE that was there, helping us learn everything we needed to know prior to being discharged.
     
  7. Nelson

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    We were endoless for the first four months following Derek's diagnosis a year ago.

    We were CDEless for the first 3.5 months after leaving the hospital without significant training (we were on holiday in Canada and had to come home before there was time for much training).

    Our family doctor thought he could handle it until we were able to get in to see an edo and/or CDE, but he was trying to treat our 8 year with type one like an adult, so I pretty much just used our family doctor as a tool to get prescriptions and ignored most of the rest of what he had to offer. Even went against his advice on a couple of occations.

    The first month was abolute hell as I'm sure you know. But with lots of reading (practically nothing but reading and taking small scary risks with Derek's insulin regimes) we made it through and got pretty darn good and confident with it.

    We have since spent several hours on several occations with our CDE, which has been of limited use except for the reasurance that we got things figured out pretty well.

    We are also now on a regular routine with our endo who has made sure we got all the routine tests for ciliac's desease, kidney problems, A1Cs, etc. Since our A1Cs have stayed on target, the endo pretty much checks for caluses on Derek's fingers, checks for signs of not rotating injection sites, and general health, all of which could be done without a pediatric endo, but rather a decent CDE and a cooperative family doctor.

    However, there is a depth of knowledge that our endo has that the CDE and family doctor clearly do not. So, there are often more "advanced" questions that the CDE tries to give a standard textbook answer to when there really isn't a standard textbook answer, and the endo has the experience to give perspective that others cannot.

    In the end, I would probably suggest getting attached to a pediatric endo, even if the visits are only a couple times a year. That way there is someone with that little bit broader perspective that has records on your child and can give that little different perspective on any issues that arrise over time.

    Good luck.
     
  8. Momof4gr8kids

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    We had our pedi endo quit. He was the only one here. There are regular endos but I hadn't heard much good about them from other parents, and with the 700 people that were displaced by our endo leaving it wasn't easy getting into someone. We have been at this a while, so for now we are using our GP and CDE. We do all adjustments anyways, and I know what testing to ask for yearly ect.... I really just need someone if something comes up, to write orders for and translate the blood work, and write scripts so we are ok for now.

    I'd suggest maybe seeing if there is someone in another area that you could travel to see, or maybe bringing your reg pedi, or GP in on it until you can find a good replacement that you feel good about.
    I know how scary this can be. You guys will be ok. Take care, Jamie
     
  9. Beach bum

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    We actually use our CDE more than our endo. In the beginning, while we were waiting to see our endo (we weren't happy with the local endos) in Boston, the CDE from the hospital was our liasion. Then once we got an appt. with the endo we started using that cde. It is actually easier to get into contact with our cde as our endo is only in limited days.

    We have an incredibly good relationship with our cde (and endo too!), and if we have a problem that needs a bit more knowledge, she touches base with our endo (it's easier for her, she just pops her head into her office), and then gets back to me.

    Our CDE writes all our scrips. She is fully authorized to do so. I would honestly say that other than pump authorization the cde can give about the same amount of knowledge/assitance/guidance.
    I wouldn't worry about having to use your CDE as POC until you find a new endo. However, this is just our personal experience.
     
  10. Mommaof7

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    Unfortunately, finding a new endo isn't going to happen, there aren't any options right now. So unless they get someone new on the island, we'll be using the CDE.
     
  11. sam1nat2

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    We have a great team of endos, however we have learned so much more from the nurses. When we go to the endo apt, we see him for the least amount of time. The nurses tell us the blood results, and when I had questions about dosing n the past, the nurses are who offered advice. The last time I spoke with an endo after hours was when I overdosed ds, I asked how to figure out how many additional carbs to give him, she just said give ice cream---I could have gotten that advice here:p
    Although I'm happy to have great endos, I feel diabetes treatment is a team approach---parents, CDE, endo and a few strong players can compensate for a missing one, but that's just my opinion.
    Is there an endo you can "contract" with who can advise if there is something the CDE can't help with??
     

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