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Is this normal??

Discussion in 'Parents of Teens' started by Victoria!, Jul 28, 2011.

  1. Victoria!

    Victoria! Approved members

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    My daughter was DX end of May. The Dr who began treatment while she was in PICU is the same one we have been seeing since and we really like him. He had told us at the beginning that we would be seeing his NP when it came time to start the pump. So a week ago, we had an appt. with her. She immediatley started off saying she was going to change the insulin regime we are on as "she didn't like it", of course this was before she had even looked thour the chart. She proceeded to tell us the Dr was wrong, but everything would be "fine" now. She then told us we would be seeing HER from now on, and the Dr only ONCE A YEAR....Choke...excuse me?

    Does anyone elses Endo run their practice this way? No way in h@ll I am comfortable with my child being under the care of a nurse instead of a Dr. I am ready to run for the hills. :mad::confused::mad:

    Theres even more that now has me mad as heck, but I'll wait to drop that as it will start a whole other conversation!
    TIA!

    Victoria
     
  2. kimmcannally

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    I can only tell you what our endo does and we see him at every visit. A nurse comes in and runs the numbers, but he also comes in and visits with us, asks us "what can I do to make your life easier?" Every Time! :D
    He's awesome! :D
     
  3. TheFormerLantusFiend

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    A lot of nurse practitioners are really great. I see one for my primary care and I never ever see a doctor in that practice (I used to but he was awful).

    However, this particular NP sounds like a nightmare.
     
  4. Becky Stevens mom

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    This person is so far out of line Im surprised that she hasnt lost her job yet! She is a team member yes, along with the endo, CDE if you have one, dietician and of course your daughter and family as the team leaders. She is trying to take control out of the endo's hands and thats not going to fly. I would let the endo know that you would prefer to see him more then once per year. We usually see ours at each appt but I would prefer to see the CDE
     
  5. Victoria!

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    OK...So it is a bit as I thought...UGH this is NOT going to go on my fun list. So here is the rest of the story, and PLEASE educate me where needed/if I am off base.

    So the appt we had was to get ready for the pump. She was fine with that and I asked if we could do a CGM with it as I would REALLY like to have an alarm for lows more than anything (my mom is also type 1 and there were several occasions where I went to wake her up or came home from school and she was grey and foaming at the mouth from bad lows... Not a picture one can easily get out of your head and honestly this is my BIGGEST fear)

    She said "no". First, she tried to tell us it would be too much for my daughter to carry 2 PDMs in her purse. When I nixed that, she told me it would be too much for us to handle starting both in a short period of time, then she told me that she was sure it would confuse us and maybe in a year or so. She told me that we needed to have established trends before starting it ( I said we did) and she said that the cgm is only to be used to notice trends ...seriously! I of course asked "well which is it?" she couldn't answer....UGH. What the heck? I told her during this visit that I was not comfortable with her taking over Lexies care and she "seemed" fine with it.

    So we had our first pump education meeting today in the office w/ the educator who we have seen many times. I asked about the CGM and she was baffled as to why we werent allowed to have it. She said she would speak to the NP and explain that because I do have a lot of experience from my mom, we are a bit ahead of the curve and would not be the type to stop testing or overreact to data. Not only did she say NO again, but now has pushed Lexies pump start date back by 2 weeks. I am so mad I could SPIT!!!

    Sorry this got so long, I guess I needed a good old fashioned "vent". I left a message at the office that I needed to speak to the Dr. Any words of wisdom before I talk to him?
     
  6. caspi

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    I don't usually say what I'm about to tell you because I know how difficult it can be to find pediatric endos, but if what you are saying is in fact true, it's time for you to find a new doctor.

    It is obvious that you are not comfortable with this practice, so it would be in your child's best interest to find one that you feel comfortable with. I wish you the best of luck!! :cwds:
     
  7. Hayden'sMom

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    One thing diabetes has taught me is to listen to your guts... if you do not feel like you can work with this person and this person does not have your daughter's best interests (and yours) as her first priority... you CAN and should find a care team who does :)
     
  8. Amy C.

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    The practice of seeing a nurse practitioner for most of the the visit and an endo once a year is used at the practice my son goes to. In my son's case, he alternates between the NP and the endo.

    It sounds like this particular NP is not so great.
     
  9. dqmomof3

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    We alternate between the PA and the endo, and only go once every six months, so we see the endo once a year. In our case, it's fine, but it wouldn't be fine if we had a power-hungry PA or NP.

    I'm with caspi...you need to find another practice! If I'm reading correctly, your D daughter is 14, right? I don't see any reason why you have to have a pediatric endo at all. Find either a good GP or pediatrician who knows about diabetes, or an endo who sees adults. We have never gone to a peds endo...we just go to one who sees both adults and children. She told us the pump start was our decision, and supported my desire for a CGM. These things need to be YOUR decision, not the endo's.
     
  10. obtainedmist

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    Hi Victoria!
    We had to jump through some significant hoops to get on the pump at the BDC (one general class, one saline class and one pump start class). It made me crazy!! When I asked about trying to coordinate to get on the CGM at the same time, our endo really suggested that it wasn't a good idea for this main reason...starting the pump itself can be a bit overwhelming as there is a learning curve while adjusting basals, and sometimes I:C ratios and sensitivity all over again. Add to the mix getting good technique for placing and inserting the sets, avoiding bubbles in the cartridges, yada, yada...for us it almost felt like being newly diagnosed all over again. In hindsight, I understood why he felt doing both at the same time would be a mess for us. In an ideal world, one would want to have the CGM graph to really nail the basals over night and during the day...but from what I've read, it takes a while to get accuracy from the CGM (again, another learning curve). At any rate, his reasoning was one change at a time...learn the first thing really well (took us 7 weeks) and then go on to the next. So that was just our experience.

    Now, he wants Molly to do a week trial (yep, another class!!) I'd love her to try it, but Molly doesn't want to go there because she doesn't want one more thing affixed to her. Sadly, until something changes, our insurance won't cover it because she doesn't have enough lows (below 60)...good news and bad news.

    I do think it's shocking that the nurse would undermine the endo that way. I mean, things do change when on the pump (they decreased our total basal by 10%...though we inched it up after basal testing). Some people need less while on the pump so that is a change due to the delivery method.

    Hope things get better one way or another!
     
  11. Denise

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    I would not be comfortable seeing this particular NP. We have a fabulous CDE that used to come visit us at every endo visit along w/ the endo but rarely see the CDE now (which makes Molly sad as she likes the CDE). The CDE went over nearly everything the endo did. We love love love the cde and communicate with her much more than the endo. I say find an NP that you like and if you don't have a choice, I'd be finding another endo office.
     
  12. C6H12O6

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    What insulin regimen was she insisting on switching your daughter from / to ?

    If she is say wanting to switch you DD from NPH and R to say Lantus and Novolog that the story takes on a whole new color.

    If it is going to take a bit of time to get on the pump I think it would be helpful to try a basal bolus regimen pre pump (assuming you are not already on one.)
     
  13. Kaylas mom

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    We see the NP for all appts and the endo once a year. We have seen a couple different NP's so can you switch to another? The NP is the one that approved Kayla for the pump but she also didn't want Kayla to go to the CGMS and still doesn't altho I think I will be putting my foot down at the next appt.

    As far as pump start goes, we were told we could start pursuing it in Oct and had the pump in Nov but didn't start pumping until the week before Christmas. There was a lot of things that had to be done before then and getting them scheduled always seemed to take awhile.
     
  14. slpmom2

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    Sorry you're having a bad experience with this NP - sounds like she's a dud. Our dd hasn't seen an endo MD since diagnoses; her primary D care provider is an endo ARNP, and she's FABULOUS! My husband and I have also seen ARNP's for our own primary care for years, with no problem. They've referred out to MDs as needed. So I don't think that it's so much an issue of her being a NP instead of a MD, it's just her in general.

    With that said, if you don't like her or think she's a good match for your child, look elsewhere.

    As for the pump/CGM thing, we were also strongly advised not to start the pump and the CGM at the same time, so that we could get settled with one before dealing with the other. This was from our endo ARNP, who knew that we were totally on the ball, and who was facilitating our pump start only 3 months after diagnosis, when hospital policy was to wait a year. In the end, she was right - we started the CGM about 4 months after the pump, and appreciated doing only one at a time. So it worked out for us to separate the two, though I'm sure not everyone would feel the same.

    Good luck getting it worked out!
     
  15. LJM

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    We most often see the endocrinologist. However, sometimes we see fellows in addition to the endo (teaching hospital). One time we saw the NP and she is the best of all of them---she is type 1 herself and she really gives us good care and advice.
     
  16. tuckerce

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    We recently had to switch to a new Dr. because we relocated. I encountered something similar, in that out of last 5 appointments we have had, we've seen the doctor twice....Can you say UPSET? I was because the appointment was scheduled for the doctor and we did not even get the luxury of seeing an NP, we saw the clinical nurse, who other than being Diabetic herself, offered NOTHING!

    I am a Family Nurse Practitioner and for the most part, NPs generally have a collaborative relationship with the physicians in the practice, so it is very likely that your child's chart has been reviewed by the endo and the NP. As for the NP's approach, TOTALLY UNPROFESSIONAL and certainly an embarassement to the profession.

    Hope things get better for you and you find someone that you can trust with the care of your little one! I'm hoping for the same thing:)
     
  17. Sarah Maddie's Mom

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    I also feel that without knowing something about the prior Dr's proscribed course of treatment it's impossible to judge this new endo.

    Liking a Dr and getting the best care are not always the same thing.
     
  18. mom24grlz

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    That is exactly how our endo practice is run. We saw the endocrinologist at her 3 month post DX appointment. And every appointment since then has been with the CNP (which is fine, Ashleigh really likes her and I find her quite knowledgeable about Type 1 diabetes). This next appointment coming up will be with the actual endocrinologist (The last time was saw him was June 2010)
     
  19. nanhsot

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    I actually prefer the NP, and yes, we only see the endo once per year, sometimes twice (once is required I think),

    NP are not standard nurses, they do have more training. I can't say for sure what their full practice of care is, but I think they can prescribe and they can diagnose.

    Not to say the NP you saw was a good one...but there are many many good ones, and I have no problem at all having a NP in charge, I feel that typically a good NP spends much more time, is more holistic, and understands the big picture more than most MDs.

    Your experience may vary, of course, but if this NP has a good regimen to recommend and seems to know her stuff, I'd give her a chance. Her manner seems abrasive in the retelling of it, but perhaps she has some underlying reason for that (did the regimen need updating, for example).

    A NP is not "just a nurse". I'd keep an open mind, but I have a bias towards DOs, NP, and PAs and generally prefer them over MDs! Without fail, every NP and PA I have seen spends significantly more time and seems to understands things at a level that makes sense to me.
     
  20. Flutterby

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    We saw the endo for the first 4 years, every 3 months.. then she went out on leave.. we started seeing the NP, I like her, more than I like the endo.. We saw her for a year.. I asked if we could just see her and the cde, she said yes, but we need to see the endo at least once a year.. fine.. I actually trust the cde over the endo.. the cde happens to have type 1.. we often decide together to override what the dr suggested, in over 5 years I know her suggestions just don't work for us... Practices CAN and DO operate like this, but its OUR choice to see the endo once a year.. we've been at this for a while and I feel we need 'fresh' faces right now..

    It sounds like the NP is a control freak.. even though we see the NP and cde most of the time, they DO check with the Endo on certain things.. the endo has the final say in specific areas.. If you don't want to see the NP, then next time you have an appointment, let them know.. at our office, the CDE does ALL pump starts, figures out dosing for you/basals/carb counts etc.. I'd have the endo/cde override the decision for the cgms.. I'd also ask why the pump start date has been moved.
     

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