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Frustrated.with the endo. would you look to switch

Discussion in 'Parents of Children with Type 1' started by wearingtaci, Dec 7, 2012.

  1. wearingtaci

    wearingtaci Approved members

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    We had the first visit with the endow since dd was diagnosed and I'm extremely frustrated. I asked if she could have smaller pen needle since she is a tiny little thing and has to pinch a lot to get enough skin to inject her insulin and be refused saying the shorter thinner needles are unreliable. Then we asked about a cgm so we could feel a bit more secure at night that she was ok,and be stated that they are only diagnostic tools. Since coming to cwd I know others use them for more then diagnostics.
    DD doesn't seem horribly upset by the shots,bit it seems like we should be trying to make her life as comfortable as possible and not just endure.
    The trouble we are havoc.g is of we change endos we would ha e to travel 3 hours each way for appts or God forbid a hospitalization.
    Would you look to change,if she was your child?
     
  2. tiger7lady

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    What gauge and length are you using currently?
     
  3. nanhsot

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    I would, yes. The MD works for you, and should be more receptive to and respect your research and needs. Your requests are certainly reasonable and I can't even imagine an MD who would object to them! Smaller needles are unreliable? CGM diagnostic only? Wow.

    Does your endo have a partner within his/her practice? We've done that once so far, just switched within, that way we kept the CDEs we had relationship with and the hospital is the same. We drive a bit over an hour now, and it's not horrible since it's only every 3 or 4 months. Not having a hospital a bit closer would bother me (ours is the same hour away as the MD), but remember that in an emergency you COULD go to another hospital, just wouldn't have YOUR Dr. on hand. My son has been hospitalized in a hospital (out of state actually) without his endo and we just kept in touch via phone, both me and with the MD handling his care.
     
  4. JNBryant

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    I had many issues with our previous endo. When he dx'd my son, not only did he not give me an I:C ratio, but he never gave me a correction factor either. He refused to write a script for the insulin pens because he said that my son was too young. I never understood what the problem was, seeing that my son isn't giving himself the shots..I am. He wouldn't allow us to get a pump, nor would he allow us a cgm because again, he said our son was too young. After 6 months of the same song and dance, I not only felt like I was running in circles, but the fact that I got more information from people here at CWD than I did from him about the most basic things was troubling. We wound up taking him to his follow up appointment not too long ago and had a new endo assigned to our son. I would have driven 4 hours for an appointment if it meant getting the information and support that I needed. Thankfully, I didn't have to do that, but your endo should be there to listen to you and work with you; not to tell you what you can and cannot do when it comes to making things easier.

    Hospitalizations are very real and can happen, especially if your child comes down with a stomach virus. If that ever happens, your local hospital could get in touch with your endo (whether he's 3 hrs away or not) and work with him to turn things around. If you're unhappy with the way things are going, I would switch. Getting the proper care for your child is important, and I don't think that you should have to continue with a doctor that's unwilling to work with you.
     
  5. caspi

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    We had a similar issue with our endo in the beginning. They didn't want to give us an rx for ketone blood strips, saying they weren't necessary. I researched and printed out data to the contrary. I got the rx. :) There is a lot of new "young blood" in our practice now that I'm very grateful for and haven't had any issues in a long time, but in the beginning it was a bit difficult "training" the CDE's that this wasn't 1990 anymore. ;)
     
  6. tiger7lady

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    We had similar situations where I would ask about blood ketone strips and get the response they were not necessary. I asked for a CGM and was told that people get them and then they sit on a shelf never being used. It took a little bit of time for me to become assertive and instead of asking for things I told them what I wanted. I got a blood ketone meter and at my next appointment I told them I needed a script for blood ketone strips. They didn't bat an eye and they wrote it. I printed out the info I needed them to fill out for the CGM and handed it to them and said you need to fill this out. Again they didn't bat an eye and did it. When I wanted to try Apidra I told them I wanted to try it and I needed them to write the script. Again, didn't bat an eye and did it for me.

    I think if you walk in with the attitude that this is what I want and it will be better for my child (as long as you do it in a respectful way) then it might work. If you do that and still get a no then I would be looking for another doctor.
     
  7. wearingtaci

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    we are currently using the 8mm 31 gauge needles. They seem small until we saw the even smaller pen needles that the secretary at her school uses,it was the secretary that even brought up the pinching so much since we didn't know better.
    He doesn't have a partner,and we only had our very first follow up,so I guess if we are going to change now is the time to do it
     
  8. Jaredsmom

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    Yes I would switch we drive 2 hrs to our endo each way and have for almost eight years. As far as hospitalization goes he has been hospitalized 2 times in the last almost eight years and both times he stayed at the local hospital and was managed via phone by our endo and his local pediatrician. We consider the drive well worth it we get what we want/need for our son without question, they have a 24hr nurse line, and they follow up quickly when asked for something. It is very important that you have a endo that you don't have to do battle with over every little thing. Good luck:cwds:
     
  9. mom2ejca

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    If you are able to email your endo, I would send an email telling him that you considered his opinion about the smaller pen needles and did some of your own research and you would like to try them. Make sure you include the pharmacy name, phone & fax number that you want the rx sent in to.

    See how he responds, then decide if you need a new endo;)
     
  10. caspi

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    I totally agree with this. I was not backing down and when the CDE realized it, she gave me what I wanted. We also had an issue with insulin - they only wanted to rx 1 vial a month and I told them I wanted 2. She said that they might be "audited" by the insurance company and I told her I didn't care - give me the RX and I'll deal with it. And we've never had an issue. Again, it was all done politely and respectfully. :cwds:
     
  11. hdm42

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    My son was 9 when he was dx'd, and they started him on the 8mm pen needles. He complained that it hurt, so they switched him to the minis, which are 5mm. We have never had a problem with them being "unreliable". I know a lot of people with little ones who use the 4mm nanos, and they are very happy with them.

    I would hold my ground with the doc and say you want the shorter ones. The easier and less painful you can make this for your child, the better, and the doc should support you in this. Call the doc's office and see if the nurse can just call in the new script for the needles. If they continue to refuse, I would go to another doctor.
    I would definitely drive a few hours to get a doc I can work with. As others have said, even if your child is hospitalized, they can talk to the endo by phone.
     
  12. Joretta

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    Definitely change and look for recommendations on here. I have changed 3 times do to difference of opinion was once, incompetence of DE once, and poor relationship with dietitian once. We need a complete team.
     
  13. wilf

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    I would try first to educate him. If he isn't open to that, then switch.. :cwds:
     
  14. katerinas

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    I would definatelly change doc and I would definatelly change the needles! We use the BD 4mm 32G and we couldnt be happier!
     
  15. Meredithsmom

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    This was your first follow up since diagnosis. Get to know each other. I hated our endo and CDE for about the first 6 months after dx. Then I realized that what I really hated was the fact that I knew who they were. I hated that Meredith had T1D and that life was different and that she would have this disease for the rest of her life. Then my outlook changed. Instead of looking at them as the enemy, I looked at them as partners. Our relationship drastically improved.

    In my experience, endos want what's best for your kid like you do. It's just figuring out how to communicate that in a way that works for both of you. And if you can't figure that out, find someone who you can figure it out with.

    Best of luck.
     
  16. shannong

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    We use 4 mm BD pen needles. In Canada, all diabetes supplies, insulin, pen needles, etc. can be bought without a perscription, so nothing can really stop up from using what we want. My son does not experience pain with the 4mm needles.

    At my son's first 3 month clinic visit when we first met his endo, we brought our ipad so my son could have something to do while we waited 3hours for the appt. The endo then started questioning my son about his activities and then turned to us and said that he wanted to make sure that he was not playing video games all the time. Nice. He also never asked us if we had any questions or how he could help us. Just looked through our son's log book and told me I should be color coding it. Anyway, I'm definitely going to look for another endo. I truly get no help from my son's team - the dietician and nurse included. They just seem so unwilling to really help me figure out the difficult situations. I always get answers like - "going high now and then doesn't hurt him". Also when he was first diagnosed they automatically put him on NPH and never told me that any other insulin or pumps were available. I learned early on that I had to do the research myself and then tell them what I wanted. We switched to an MDI program. I'm supposedly at a "leading edge" hospital - the Hospital for Sick Kids in Toronto, but I find it anything but leading edge. I find it frustrating that I have to be in the position of finding out about things myself, and then stating what I want. I mean, aren't the "experts" supposed to be helping me. Instead I find myself defending my position on what I want for my child. Maybe I just need a new endo. Do other people find endos that really help them?
     
  17. denise3099

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    Your options aren't just to suck it up or switch. You can simply state politely that while you understand their concerns, you would like to try it anyway. Then repeat repeat repeat. If you don't get what you want , then you shop around for another endo.

    There is no garentee you will not have differences of opinions with a new endo or any other doc down the line. Get used to advocating for your child now.
     
  18. obtainedmist

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    Have you tried just calling the nurse at the office and requesting a rx for the 4mm nanos? That might be the easiest thing (with an explanation that you want to give them a try to see if they work as well as the others). We never speak to our doctor when dealing with Rx issues...sometimes that's a good thing! :)
     

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