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Frustrated with Endo; refuses to let us move forward

Discussion in 'Parents of Children with Type 1' started by Lisa - Aidan's mom, Jun 8, 2012.

  1. Lisa - Aidan's mom

    Lisa - Aidan's mom Approved members

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    DS's endo causes alot of frustration - very old fashioned.

    When DS was first DX'd, endo said he has to wait one year to start on a pump. At the time, I didn't think that was an unreasonable request, so I let it go.

    At the 1 year mark, I asked about OmniPod and he downright said NO, DS will lose it. Ok...

    A week ago I asked about moving forward with a Dexcom CGM. Again, a 'no' because it is approved for people over 18 (although a few here said their endo's bypassed the age requirement), grr.

    I said, ok how about the minimed. Waited a week for an answer which was "do you know you have to stick a needle and catheter under the skin?! It's not good for kids."

    Anyone else keep hitting a brick wall with their child's endo??

    DS's endo is the chief endo at a children's hospital in a large city, believe it or not. The other (somewhat) local endo's office does not accept transfer patients.

    I can go to a different endo, but they are much further away which means an entire day off of school for DS and work for me, but I don't see how I continue to work this guy :(
     
  2. LoveMyHounds

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    IMHO it would be worth it.
     
  3. tiger7lady

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    If I were you I would leave even if it meant more a problem for me. There are a ton of kids on pumps and CGM. It is not the Endo's job to decide if your son will lose the Omnipod PDM. How dare he hold you back from treatment options you feel are best for your child.

    I would not just leave I would RUN.
     
  4. Christopher

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    Have you said to the Endo, "We understand what is involved in (pumping, CGM, etc) and we really want to try it. If you will not help us with this we will be going to another practice."? If you say that and he still refuses, then to me, it is worth driving a little farther to get the kind of care you think your child needs.

    Good luck
     
  5. Beach bum

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    IMO, worth the move and the sacrifice of a day off. We travel to see our endo and we have gotten onto a pretty good schedule of fitting in around days off, if not we go for the latest appointment of the day to minimize missed days.

    You have been at this a while now and are probably more than ready. There are studies that show the benefits of insulin pumps in younger kids (used to be a link on the home page here). We got our pump when my daughter was 4 1/2 and we haven't looked back, it's worked very well for us.

    I agree with Christopher, tell the doc this is what you want to do, you are ready and if you can't do this, then it's time to part ways...

    The doctor works for you, you don't work for him. YOu have as much of a say (if not more) in your child's care than they do.
     
  6. heamwdevine

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    Yes, it's time to go! We found this and decidd to move on.
     
  7. Caldercup

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    Or maybe have a few of the pump reps set up a time to talk to him so he learns what pumping is like and how it benefits the child--both medically and socially.

    And the "canula" under the skin doesn't hurt and is certainly less needle-sticks than on MDI. (Sometimes, you get a bad site/position and you need to swap it out, but my son says he doesn't feel it past the first few seconds of the insertion.)

    I do understand that MDI works for many people, but we found the pump an easy and less painful way to manage his diabetes. It helps keep my son's BGs in great range and it does the complex calculations for him. It also allows us to upload pump data to our endo office so we can get their help making adjustments. I don't know that I could ever go back to MDI.
     
  8. caspi

    caspi Approved members

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    I agree. I understand that it isn't easy to find a pediatric endo - ours is 120 miles away. OP, take a step back and re-read your post as if it was someone else writing it. What would you say to that person? I'm pretty sure it would be "Find another endo". :cwds:
     
  9. 3kidlets

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    Is this St. Peter's in New Brunswick? It has to be because this is the same thing we ran in to with the OmniPod. They used the same excuse about Hana losing the PDM and the Dexcom not being approved for children.
    We got our OmniPod but I had to jump thru hoops. But i put my foot down and said this was how it was going to be.
     
  10. heypb

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    If the OP is considering switching, and is considering CHOP instead of St. Peter's (a lot of assumptions there), she would be able to go to a satellite office in Princeton, NJ.
     
  11. 3kidlets

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    I wasn't aware that there was a satellite office in Princeton. That's good to know. We are about 35 minutes from Princeton. I may look in to that. I am not happy with st. Peter's but we only go 3 times a year - basically to get our prescriptions refilled.
     
  12. Lee

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    Switch. You should be able to get the treatment that you need for your child.
     
  13. heypb

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    We are very happy with CHOP in general and the satellite office in Princeton, actually I can't say enough good things about our relationship with the staff, and the guidance and support we have received from them.
     
  14. Jaredsmom

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    We drive 90 mi each way to our pedi endo and always have. We thought about switching to one a bit closer still 45 mi but since we really like our endo sometimes it is just worth the drive. As far as them taking a day off and you taking one off just schedule as late in the day as possible that way you both get a half day in at least. We figure it is only 4 times a years so what's the difference as long as our son gets what he needs. Our son has been on the omnipod for 4+ years and has never lost his pdm. His glasses now that's a different story :rolleyes:
     
  15. 3kidlets

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    What's the deal with glasses? Hana has lost 2 pairs but has never misplaced or forgotten her PDM!
     
  16. denise3099

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    What do you say when he says no? If my doc said no bc "whatever", I say, "I understand how you feel but I still want to try it." Then he'd say No it's not a good idea. And I'd say, "I understand how you feel but I still want to try it." and he'd say, well I won't prescribe that, and I'd say, "OK, we'll find someone else."

    I just can't imagine taking no for an answer. I'm a pest but I can't see anyone leaving the endo's office after being told you can't have something. Call the endo and tell him what you want and if he doesn't give it to you tell hime that's a shame and switch docs.
     
  17. PixieStix

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    I would never allow an endo to keep me from getting what I believed to be the best care for my child. Yes, I would listen to their rationale based on their professional experience, but in the end I would get what I believe was best for them or leave the practice. We are talking about a pump and CGM, which are pretty much standard of care at this point...not like you are demanding a transplant or artificial pancreas for goodness sake.
     
  18. Lisa - Aidan's mom

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    Thank you all for your support, I appreciate it. Truth is, I knew by the last e-mail from the endo's office that I HAD to switch, sigh.

    I have a patient transfer package on the way from another endo :)

    Aimee, yes you are correct with the practice and I can't believe they told you the same thing about your DD loosing the OmniPod and not approving the Dexcom! I think they really just don't want to be bothered and couldn't care less if they loose a patient here and there. He's a grumpy old man and he's told me other things about my DS that would make your eyes pop in disbelief. My neighbors go to the female endo and she seems better. Good for you for sticking to your guns and getting the OmniPod for your DD!
    I'm in Monroe, I imagine you are pretty close by since you said you're 35 minutes from Princeton.

    THANK YOU for the reassurance to move on! BELIEVE ME - I have learned soooo much more from all of you than our endo!!!!
     
  19. 3kidlets

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    LIsa
    Yes, we see the female doctor. She is better and much more open to new things. But another problem is the Nurse, I'm sure you know who I'm talking about. She is the one who said no OmniPod. And I told her Oh yes we were PODing. Either way, you can get whatever pump you want. They will give you lots of excuses but we ultimately got it. Hana only had D for 5 months before we got the pump.
    We saw the male dr when Hana was admitted to the hospital and he was ridiculous. Luckily, the female was on duty the following days.
    I don't like the practice at all but we only go there to get our prescriptions refilled. I never call them for anything else. I should switch but just haven't felt the urgency since I don't use them for anything!

    Good for you for switching!

    We are in Hunterdon county. When I took Hana to the ER for dx, they gave us the option of being transferred to St. Peters, Morristown or CHOP. I only picked St Peter's because I had 2 other children at home and knew it would be a logistical nightmare for my husband getting back and forth to Philly while we were in the hospital.
     
  20. Lisa - Aidan's mom

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    Aimee, small world! Yeah, we got stuck with the male doctor when Aidan was admitted, I don't think he's ever smiled once since we've known him. He has zero tolerance for kids - WHY do you work with children then?!?!
    I'm surprised (but happy for you) that you got Hana the Pod, the nurse made it sound like it was completely out of the question. But honestly, with two sick parents and a million other responsibilities like everyone else, it's not in me to 'fight the fight'. They won. I give up and I'm looking forward to starting fresh!
    Just FYI, only the initial CHOP visit must be in Philadelphia, follow up app'ts can be done in Princeton.

    Have a great weekend!
     

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