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Can anyone offer any suggestions?

Discussion in 'Parents of Children with Type 1' started by DiabetesMama, Jan 17, 2016.

  1. DiabetesMama

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    OK, so here it is. The good, the bad, and the very ugly. We had a 3:00 appointment in Nashville, so I smartly left at 1:15. Got there at about 2:00 only to find out the closest parking garage full to the gills and the nearest is almost a block and a half away. No big deal right, be in and out before it gets dark. We go round and round, who knows how many floors in this huge parking garage and end up almost on the roof! We collect our things, walk to the elevator and get to our appointment right at 2:20. Good, we are early. Get settled in and we wait. And we wait. And we wait some more. At 4:30, they call us back to the room and the nurse we are seeing comes in and basically asked me what was going on and just claimed all his lows were cause by "too much insulin". I almost had a hysterical moment! Too much insulin! I stopped her midsentence which is not like me and explained again what was happening and why we were wanting the celiac test. She looked between my son and myself and told us there was not enough symptoms or family history to have it done. Then I suggested that she look at his graph and she could see that his patterns were way off. She agreed but couldn' t "find" the graph in the computer system. Come to find out that the graph was there, but she was looking for a Medtronic pump graph, not the Animas. She conveniently left us and attended another child so the nurse could "upload the correct graph" which was already there. She finally came back at about 5:00 and "found" it and looked it over and said that we were doing fine, there is no family history and that we just need to adjust insulin. OK, the good part was his a1c was the lowest it has ever been at 5.8. The bad was she doesn't even listen to me. The ugly was it took us another two hours to get back home due to a bad car accident, not to mention she never told me anything I didn't already know. So why am I paying almost $700 a visit? She told me that we are the best controlled family that she knows of, so why won' t she listen to my concerns? We obviously know what we are doing! So I found out in the mix of all the kaos that he was tested during diagnosis and he was totally negative. She explained that it would not just start over a week's time and we shouldn't worry. I think it's time to stop seeing the nurse and just keep the doctor's appointments. Sorry, just had to vent. I don' t have anything else to report. Thanks for all the prayers.
     
  2. msschiel

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    Ugh! Sorry you didn't get any closer to an answer. That is so frustrating, especially when you have to drive a bit to get to the appointment. I wish some drs. or nurses or PA's or whatever would stop thinking they know everything about our children and just listen to the parents. Have you tried asking his pediatrician? Maybe he/she would test. We haven't had a celiac rerun since diagnosis either. Sometimes those symptoms can be so vague and you have a slight upper hand due to the diabetes and seeing the numbers changes. Hugs! There has to be someone that can help you find an answer.
     
  3. DiabetesMama

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    Thanks for listening. I wish they didn't think they know it all. I KNOW my child and I know when something isn't right. Well, she did show the negative test result from his diagnosis, and she wants me to keep a log of if and when he has tummy troubles again. I am thinking about just canceling visits scheduled with her and keep the visits with his endo. Just thought I would let everyone know how it turned out and to thank you for all the support, suggestions, and prayers.
     
  4. forHisglory

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    How terribly frustrating!! That is incredulous to wait that long and only see a nurse who dismisses you. Any chance you can switch practices? We are tested at least annually for thyroid and celiac. With over 300 symptoms and it being asymptomatic (for some) no way that nurse can rule it out without a test. I would call and raise kane...leave a message that goes directly to the endo. He's the only one legally licensed to diagnose, prescribe, and determine course of treatment anyhow. It doesn't even sound like she has much oversight. Geez. Great A1C! Especially considering lows were not a problem until last week! Way to go Diabetesmama. I'm sorry it was such a crummy experience this time.
     
  5. DiabetesMama

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    Thanks. I was very surprised about the A1c, but I figured that she would listen that much more when she saw that number. I told her that was why his number was probably so low was because the last week and a half his numbers were not normal. Nothing like getting ignored when you feel like something is wrong. I don't really want to switch places because I really do love the hospital in general and his endo is amazing! He listens to everything and will actually wait until you are finished before trying to talk. The nurse thinks she knows what you are going to say and talks over you, like she knows everything that is happening in your child's life. I would think since we are one of two families they actually wrote the prescription for the Animas Vibe for before it was even approved for children and the fact that we have some of the lowest A1c results they get, you would think they would at listen to our concerns since we know what we are doing. We have an appointment with his endo in April, so maybe I can discuss my concerns with him and talk about maybe switching nurses. I will be keeping a journal about his tummy stuff as well so I can have some info if it continues to happen. Thanks for the prayers and support.
     
  6. rgcainmd

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    I'd email (or use MyChart or whatever your clinic uses) your son's endo and briefly and objectively summarize your visit with the nurse and why you were dissatisfied.Then carefully list the reasons why you are requesting a tTG-IgA test (for celiac). It wouldn't hurt to include a reputable link to support your request. (I'd preface the link with "I'm sure you are already aware of this article...")

    I'd insist on seeing your MD at every endo appt. We've always seen the endo after nurses and residents take care of the "busy work".

    ETA: If your son's pediatrician is geographically closer, you can request to have the blood draw performed there and have the results sent to your endo.
     
  7. kim5798

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    Agree with this. 300+ symptoms, and largely asymptomatic & largely underdiagnosed in US. My child had no symptoms to speak of...it was only after diagnosis & going off gluten that we noticed, hmmm been a long time since she has said, "I have a headache today" or "my stomach hurts". A lot of those instances we attributed to her not feeling like going to school, etc. She also says it was like a "fog" had lifted, she just overall feels better. They should run the test. I would push the pediatrician to order it.
     
  8. DiabetesMama

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    Yes, I probably will just request it be done at the next appointment. He has been feeling much better, so it might be that he had picked up some weird bug with no symptoms. ??? He never gets sick and besides the few mornings with tummy cramping, he didn't act sick either. His numbers sure acted like he had a tummy bug though. His numbers are back to their up and down crazy routine, so I feel like it might not be anything to worry about. I just wish that when I have a request with good reason, that at least they listen to me and just draw some blood. How hard is it to do that to give parents some peace of mind? I had already gotten him prepared to give blood, and the nurse had already gotten the numbing cream on his arms ready for them to draw blood, then the nurse practitioner has to completely go against what I felt was an important thing to have done. I will be really mad if he does develop this over the next few months and she wouldn't listen to me to just run the test. I happened to overhear another patient who had just gotten done with her appointment with the same N.P. and she said the same thing as what we always experience. She won't listen, she talks over you, she thinks she knows what's going on without listening to the whole story, she dismisses things, etc. So it's not just us. She doesn't have a big fan base. Well anyway, that's where we are at with everything. He has an appointment in April with the endo and I will definitely be keeping track of tummy issues for back up. To all those parents who are dealing with both of these diseases, you truly are amazing! You have my admiration and my prayers as you struggle day in and day out for your child. Diabetes alone is such hard work, I cannot imagine what celiac does on top of things. Take care and thanks for all your concern. :wink: Going to try and get at least a few hours of sleep before we hit the ground running again.
     

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