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What's a "normal" Endo visit like with your dr? (sorry, kinda long)

Discussion in 'Parents of Children with Type 1' started by seeingspots, Apr 1, 2009.

  1. seeingspots

    seeingspots Approved members

    Feb 11, 2009
    Our son, Alden, was dx'd back on 12/30/08 when admitted to Children's Mercy with DKA. Anyway, while he was in the hospital, we were assigned to the "Red Team" and thus also the doctor who was in charge of this team. During the 3 days our son was in the hospital, we only saw "our" doctor one time-- and this was only when he was with a group of other drs/residents while making rounds. I wasn't impressed, as he never spoke to me or even introduced himself... one of the nurses told me who he was. (Otherwise, we only saw the dr from the PICU, who is not an Endo.) Upon release from the hospital, we were given an appointment in 2 weeks to see a Nurse Practitioner, not the Endo. She was nice, but not particularly informed on Alden's case, as she didn't even have any of the records of his blood work or labs from when he was in the hospital. Otherwise, we've just dealt with our CDE for any bg adjustments (and another on-call doctor when we had a crisis).

    Finally, (three months after dx), last week, we had an appt with "our" Endo. Prior to his coming in the exam room our CDE came in and looked over Alden's pump history (they didn't have the software to download it, and I don't think she likes the way I log it, as I use a notebook- not the little pre-printed "check register size" logbook we got with the pump... I like to write way more than I can fit in those). She asked us if we had any questions/concerns for our dr, and I mentioned, among other things, that we were interested in the process of getting Alden a CGM. He has had a lot of highs/lows over night, although nothing too drastic (down in the lower 60's), but that's mainly because I've been getting up every 2 hrs throughout the night to check/correct... but it's wearing on me (especially being pregnant again and also having Alden's 2 yr old brother to run after), so a CGM with alarms sounds heavenly. The CDE said that given Alden's young age and the fact he is not aware of lows, it shouldn't be an issue. She gave us some fliers on different CGM's and said the dr would be right in.

    Well, he came in, and literally, stayed a good 8 foot away from us the entire time. Never checked our our son at all... didn't look at his site, didn't listen to his chest (he has a murmur), didn't do any kind of an exam. Being we've never had an Endo visit before I have no idea if this is normal??? All he did do was look at the paper that the CDE had hand-written down the last 5 days worth of bg #'s, then said, "Well, it looks like he's doing fine. You don't need a CGM at this point. We can maybe talk about it at his next appt in 4 or 5 months." Now, Murphy's Law of course, but Alden's last 5 days *were* good... but if he'd taken the time to look at the past month or two, he'd have seen that we've battled for weeks... and, the very next day (and continuing all this week), we've been back to fighting highs/lows (today he was 410 after breakfast, "EzBg" corrected, and was 64 two hours later!?!). Alden had a good A1c (he was 6.8), but I'm guessing this was more from the highs/lows cancelling each other out (if that's possible???), than from us really being under a good level of control. Anyway, as I tried to ask a few more questions, he was backing towards the door the whole time and giving short answers. I was irritated.:mad: I felt like, "Why did I even drive the hour and put up with all of this just to get a brush off and not even have him touch/look at my child?" At the "check-out" desk for making a follow-up appt., we were told that he had NO openings for at least 5 months, and then all they could do was put us on a "wait list" and give us a call if something opened up. Now I understand that he's busy, but seriously??, NOTHING open for almost half a year!??? We ended up just leaving and when I got home we instead made an appt to see the same Nurse Practitioner we'd previously seen, and it is instead for in only 3 months.

    My dh says that he does not want to use this Endo any more, and I have to agree that he seems to not really care at all about our son/our needs. I assume he's just too overworked to really put in any individual attention, but don't know if this is "normal" for an Endo. What do others usually have done at your Endo appointments? The problem is that we were just "assigned" to this team (we didn't choose this dr), and we really do like the CDE that is also assigned to the "Red Team". When we meet with the Nurse Practitioner in a few more weeks, my dh wants to insist that we get transferred to another doctor and team... course, I don't know how that will go over or even if they will allow it... or if another Endo will do things any differently.

    Are we expecting too much of our Endo??? Do others actually have more of a relationship with yours? Poor bedside manner aside, I at least expected ours to at least really *look* at our son... I could've left him at home for the amount of attention he got (or should I say, didn't get!).
  2. hawkeyegirl

    hawkeyegirl Approved members

    Nov 15, 2007
    I think you were treated poorly. I'm sorry.

    We see the endo at every 3 month appointment. When Jack was first diagnosed, I think we had an appointment at one week post diagnosis, another at 3 weeks, and then maybe another one in a month. At each appointment we saw the endo, and at those early appointments he spent 1-2 hours with us each time. He never acted rushed, even though I know he must be busy.

    We still see the endo himself every 3 months (along with a nurse and nutritionist). Our appointments are shorter now, but he does a physical exam of Jack each time - checks his stomach, checks reflexes, basically looks him over. He talks to Jack, too. Makes sure to ask HIM how he's doing and if he has any questions. Even though he's really too young to have much opinion on things, it's nice that he doesn't just talk over Jack's head like he's not even in the room.

    I think it's SO important to have an endo who you like and feel comfortable with. If changing is an option, I'd definitely look into it.
  3. mmgirls

    mmgirls Approved members

    Nov 28, 2008
    I will be honest, I only skimmed your post as I am between feedings.

    BUT, find a new endo.

    Your son is too younge to and newly DX'd to have an endo with short answers and limited time. OUR endo listens to the heart and Stomache?. loks and feels all areas that we have sites. Weighs and measures. checks eys ears and throat, notices if she has dry skin!

    We don't do logs anymore but if we did she would look at them, I go in with questions and even though our appointment should be only 1/2hour or so we will an can talk for an hour or more. The endo office I can call at any time, heck my endo told us at the get go that her number was listed in the phone book and she ment her HOME number.
  4. Charliesmom

    Charliesmom Approved members

    Jan 8, 2009
    Wow, we have seen the endo at every appt. since he was diagnosed. The nurse does his A1C and weighs and occasionally measures his height. She also takes blood pressure and listens to his heart and lungs and takes what records we have or takes the meter to download. Also writes down any questions we have for doc. Then Endo discusses records and any changes that she thinks needs to be made, goes over A1C, and checks injection sites, etc. His endo is really good with kids and actually helped Charlie get over his fear of doctors.
  5. alismom

    alismom Approved members

    Dec 31, 2007
    Allison was diagnosed a year ago this past December. We met her endo only as she was being released from the hospital. The conversation lasted about 3 minutes. Our appt was set up to see him in January.....nope....saw the cde. Same thing in March. The first time the endo actually spoke to Allison was in July-6 months after diagnosis. He is the only ped endo in the area. Our daughter is 13 and her endo is the only ped endo in the area...we are stuck. We have learned to go in for prescriptions and blood work and do everything else on our own. The difference is that your son is so young, if it's at all possible, I'd switch.

    TEXSONMOM Approved members

    Jun 10, 2008
    YES, find a new ENDO - this is going to be one of the most important relationships you have in ensuring successful monitoring of your son.

    We went through 4 Ped Endos before settling on the current one. It was all a matter of personality matching our expectations.
  7. ry's mom

    ry's mom Approved members

    Mar 18, 2008
    You should find another ped endo immediately...but you all ready know that!;)
    Our endo is the only ped endo in our area, she is very busy - but we saw her and spoke with her everyday in the hosp, and we see her every office visit. Our visits begin with height, weight, blood pressure, A1c and bg readings. Then her nurse comes in and speaks with ryan about what has been going on, she gets all the info from our pump history and our log book and then the endo comes in, reviews all info recorded, does a physical examine on our son, and then goes over any questions/problems we have. If I ever have a question, problem - SHE calls us back within 30 minutes...she really is attentive and concerned. D is hard enough, you should have doctor that is genuinely interested in what you have to say, so trust your instincts and find someone who is going to listen and work with you. :)
  8. betty6333

    betty6333 Approved members

    Aug 20, 2008

    I agree new endo for sure!
  9. Mama2H

    Mama2H Approved members

    Oct 19, 2006
    sounds like you got an endo just like we did at dx. It was a terrible experience and after switching I wish we had done it a YEAR before we did.
  10. DeniseS

    DeniseS Approved members

    May 31, 2007
    Get a new endo, at every visit my son gets height, weight, A1c, B/p check. The endo personally reviews all his blood sugars and pump settings, asks about his socialization,activities, how school is going. She also palpates his thyroid, listens to his heart, lungs and abdomen as well as feeling his abomen. Sha also inspects all of his pump sites for lipodystrophy. Also since she lost her CDE she has been pesonally in contact with me weekly or more making adjustments for the last year. Also if I need to I can see teh Dietitian and the social worker.
  11. Mama Belle

    Mama Belle Approved members

    Jan 23, 2007
    Definitely get a new endo!!! Totally unacceptable IMHO. All of our docs are really very good about spending time with their patients and giving them a complete exam at each visit. Yes, most patients meet with an educator first, but they always get plenty of face time with the doc.

    I honestly cannot grasp why they would not have the software to download the pump!?!?! Is this common in many practices? At the BDC we have two computers for the Adult Clinic that are devoted just to downloading meters and pumps and the peds clinic has a similar set up with computers devoted just for pump/meter downloads. Part of the beauty of using all of this technology to manage D is to be able to download the data and analyze it to make treatment changes.
  12. Flutterby

    Flutterby Approved members

    Nov 11, 2006
    for a first visit (or any visit for that matter, but really the first one) he was horrible to you.. each endo/hospital operates a little differently, Kaylee was never admitted at dx because she didn't have ketones.. but we saw our endo the very next day (with the CDE the day she was dx).. they keep opening just for this very reason.. we see Kaylee's endo every 3 months, sometimes they don't have the schedule up but they call within a few days to make the appointment.. at the beginning of dx we saw the CDE every few weeks.. we had great communication, from the very beginning kaylee's endo did a full (and very extensive) exam of Kaylee.. she sits the entire time and does not walk towards the door like most dr's do.. she takes the time (each appointment is 90min long, and she gives you her full attention for those 90min, sometimes more, if needed)..

    your endo appointment should NOT have gone the way it did, especially for the first time.. I'm sure there are other endo's in the practice that don't act this way, or you can find another one in a different practice.

    good luck!
    Last edited: Apr 1, 2009
  13. selketine

    selketine Approved members

    Jan 4, 2006
    William's pedi endo gave us her cell phone number when she came to visit him in the hospital at diagnosis and we can still use it 24 hours a day if needed (yes...she does answer in the middle of the night but I would only call then for a big emergency). We don't have a "team" of CDE's - just her -but she always does a hands on exam and talks to him directly - even when he was two. She would listen to him very intently no matter what he was talking about (power rangers, you name it).

    Get another pedi endo. Eventually your son will notice this treatment and resent it as much as you do.
  14. Gaia

    Gaia Approved members

    Jan 18, 2008
    This is EXACTLY how our visits go (except Joey doesnt have a pump) and I think thats how it should be. The 1st time I had to call after hours, I apologized and Dr. T told me straight out that if have to call at 3am - then I call at 3 am. Thats why she's there. I email the endo nurse every week or 2 to keep her updated or I call the office if its an immediate concern. Most of the time, if the nurse or Dr is w/ a patient, another nurse answers my questions. If its needed the Dr calls me back as soon as she can. Once I had them tell me that she was out on an emergency but to be safe, take Joey to the ER to have him checked.

    You should feel very comfortable w/ your doctor and they need to take the time to answer your questions. If you're not getting this, change endos! They CANNOT tell you to keep a dr you are not comfortable with. It may mean traveling ( ours is 2 -2 1/2 hrs 1 way) but if it means better care, then Id say its worth it.
  15. RosemaryCinNJ

    RosemaryCinNJ Approved members

    Mar 9, 2008
    Same here...:) I kind of like the idea of the social worker there too..she got me out of jury duty when my daughter was first diagnosed..there was NO WAY I could spend a week at jury duty with my child just coming out of PICU..so it was nice to know she stepped up with the endo for me to have me excused..[/B]
  16. Corinne Masur

    Corinne Masur Approved members

    Aug 17, 2008
    We had a very similar experience just after diagnosis but we didn't like the CNP either. She was very condescending and difficult to reach. We switched hospitals and we're happy we did (!) We still see the CNP MUCH more than the endo but we love her! Do you have an alternative? Do you have a university affiliated hospital anywhere near you?

  17. benmom

    benmom Approved members

    Apr 1, 2009
    Find anew doc immdiately. Our Endo treats our son like an old friend. We trust her completely. Witha one year old, you can't handle all this by yourself, you need and deserve an excellent physician.
  18. seeingspots

    seeingspots Approved members

    Feb 11, 2009
    Thank you all SO MUCH for sharing your experiences with me and for reaffirming my thoughts that this just wasn't "normal" for an Endo visit!!! I actually sat my husband down when he got home from work and let him read all of your replies. He kept repeating, "I knew it!", and was furious that his son hadn't even been examined or given any attention, like all of you report your Endos do. One of the things that we found amusing (well, maybe that's not the right word... more like astonishing), was that when we mentioned to his Endo that Alden's pediatrician had just discovered he had a heart murmur (and we had an appt with a Cardiologist for later that week), was that our Endo said, "Oh geez, it's nothing. Lots of kids have murmurs."... without even having touched our son or listened to his heart. Amazing powers this Endo has, being that he can diagnose from afar! :rolleyes:

    Anyway, thanks to you all, my DH has decided that he will be calling Children's Mercy tomorrow to insist on getting us transferred to a new "team" with a different Endo. :D We originally were going to see the Nurse Practitioner again in another 3 months then deal with it, but after reading about all your children normally have checked/done, we realized he technically hasn't really seen a GOOD Endo since dx to begin with!

    P.S. I was actually very disappointed when we left that appt last week that our Endo hadn't checked Alden's site. New mom to all this that I am, I was actually SO proud of that site... it was a beauty!:p Nice and straight, good position, no wrinkles in the IV3000 frame tape, and we had his pump in a new camouflage Pumpwear pack.LOL
  19. 2type1s

    2type1s Approved members

    Nov 23, 2008
    Good for you. I agree with all. We alternate with our Endo and CDE every 3 months. However, the girl's endo is always there if we have a question the CDE wants to run by her. Our doctor/CDE looks at each girl, all their sites, and does a physical exam....each time. She asks about stress, school, emotions, everything. And this past time, she made me leave the room to talk to my 14 y.o. by herself. This is to prepare her for independence with doctors when she goes to college. She starts the teenagers around thier freshman year in high school by preparing to talk to doc's about their disease (without their parents in the room to answer questions for them). She hugs my girls, remembers what they like and don't like, and really feels like a member of the family. I wish everyone could have a doctor like her.
  20. onthego

    onthego Approved members

    Nov 2, 2008
    OP- Just want to say that my son is a patient at Children's Mercy, also. We were originally assigned to the Red team, but at our first visit with the NP, she switched us to the Green team. We've been very happy with them... and I must say, I was dreading our first visit with the Red team endo. After meeting him in the hospital, I knew it was not gonna work. No bedside manner, never saw a smile... the Green team endo is very kid-friendly. My son had a lot of fun with him! I don't remember that he did as much of an exam as some of the other posters here talked about, though.

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