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what type of support do you get from your endo?

Discussion in 'Parents of Children with Type 1' started by nanhsot, Mar 18, 2010.

  1. nanhsot

    nanhsot Approved members

    Feb 20, 2010
    The other thread got me thinking, it seems that some here really get a lot of support from their endo/CDE on a day to day, or at least somewhat regular basis. That's not really been my experience at all, so now I'm mostly curious what's out there!

    We were told to fax or phone in our numbers when we left the hospital. No real time frame, just do it daily. I got feedback maybe every 3 days that first week! I was SO lost, without some trusted friends online and irl, I would have gone batty. They helped me figure out carb counting, advised me on tweaking things, told me tricks, etc. I honestly did feel like I had been thrown into an ocean with no life preserver!

    I continued the faxes for another week or two, then we did have a follow up at week 3. They had us meet with a dietician, the NP and I visited for a good long time and she answered my very detailed written questions, that was really helpful. She did tell me we were way ahead of the learning curve, which was nice feedback at that point since we have both worked really hard to get him stable.

    Our next visit isn't for 3 months.

    Since that visit...nothing really. I've sent numbers in once or twice when I thought he was going too low, but was told to pretty much hold the course, when I instinctively thought changes were needed (and I made them!).

    So, my question is, how do most offices handle the day to day adjustments, do you get much support? I really do need more support than I get, frankly, but otoh, it's been somewhat of a forced learning curve! Today I called and asked them please return the call today as my son has strep and I wanted to know if there were certain meds to avoid or go for. No return call.

    Do you feel like your endo and their CDE are there for you when you need them? How often are you in communication? Do you tend to tweak your numbers or do you rely on them for that?

    I'd also be interested in the age of your child and how long since diagnosis, though I realize that is in most of your siggies.

    My son is 15 and was diagnosed early February, so we're still newbies, to put it mildly!
  2. saxmaniac

    saxmaniac Approved members

    Jun 1, 2007
    We got to the point where their guesses weren't any better than we were. I figure they have enough problems with people who forget to bolus, than to try to advise on whether our basal for 2am-4am should be .25 instead of .2 without the knowledge we parents have.
  3. danismom79

    danismom79 Approved members

    Apr 21, 2008
    Our CDE takes care of daily management issues. If I call, she returns the call at the end of the day. She replies to emails faster than that. And I can page her in an emergency. I haven't contacted the endo or CDE outside of regular appointments in quite some time, aside from when we started pumping. Over a year, I think.

    Oh, and my daughter is 11, dx almost 2 years ago.
  4. StillMamamia

    StillMamamia Approved members

    Nov 21, 2007
    Our endos can be reached for urgent questions 24/7 on an emergency cellphone.

    For any other questions, we can call the nurse.

    We don't call them as often as in the beginning, but our endo visits are every month and a half, so that helps.
  5. Mimi

    Mimi Approved members

    Dec 19, 2008
    We see the CDE/endo every 3 months. That is the extent of my contact with them now.

    After dx we had a resident helping us daily, meal by meal for two weeks until we were seeing a pattern of numbers. Then we had a follow up appointment which happened to be about 2 weeks before Christmas. At that appointment I was told that from Dec. 24 til Jan. 5 there would be no one available to help me and to call the on -call service. :eek: This was 3 weeks into our d journey. That's when I realized it was all on me. I found this site, got myself some good books and never looked back. I get nothing out of the time spent with the Endo other than her A1c.

    My daughter is 8 and dx November 2008.
  6. Flutterby

    Flutterby Approved members

    Nov 11, 2006
    Kaylee wasn't in the hospital.. that first week we were at the endo's office daily for 4/5 hours at a time.. we have the BEST CDE.. we saw her first, then the endo the next day. we called Kaylee's numbers in, but over the course of the first month we were in the office once a week then at the end of the first month we didn't see them until the 3month appointment BUT I had contact them whenever I needed it. Kaylee's endo is the ONLY endo in the practice that leaves her cell phone number AND the place she will be when she's on call. So when you call they put you right through... all the other endo's leave a beeper number, they have to beep the endo then wait for the endo to call back.

    4 years later, I call the CDE every once in a while with questions.. I don't bother with the nurses, I like the cde, she is T1, I trust her completely. If we need more help, the endo is always there too.
  7. misscaitp

    misscaitp Approved members

    Jul 26, 2007
    I am able to get in contact with my endo anytime I need help in adjustments, usually within 2 hours just on a non-urgent email. But if it is urgent they are available through pager.

    When I saw the CDE I used to email for help more frequently, but she also would teach me how to adjust my own insulin so the need decreased.

    I'm 17 y/o.
  8. VinceysMom

    VinceysMom Approved members

    Mar 3, 2010
    Son 13, diagnosed 12/26/10. Left the hospital and called Endo's office every day with numbers. Then went to once a week or whenever I had questions and wanted to make sure we were doing the right thing if we made an insulin dosage change. Always had great responses. An Endo on our team is available 24/7. When son was in "pre diabetes" mode, Endo called me every other week and when she was going out of town, and to give me the name of the Endo on-call. We love our Endo team!
  9. McKenna'smom

    McKenna'smom Approved members

    Jan 5, 2010
    Our ped called our endo for us the night we were admitted to the hospital at diagnosis. He had a great reputation and the nurses all agreed that he was great! We met with him every day while we were in the hospital. I emailed her numbers every day after we got home for a couple of weeks as we tweaked her MDI ratios. Now, if I see a trend or have a question, I just email him her numbers and he gets back very quickly. So far, we are very pleased with our endo as well as our CDE team at the local children's hospital. We are scheduled to see him about every 3 months.

    My daughter is 9 and was diagnosed 12/7/09.
  10. Becky Stevens mom

    Becky Stevens mom Approved members

    Oct 14, 2008
    Our CDE is a saint:) During the first week she would call me to see how we were doing. She told me to call there anytime with my concerns and she would get right back to me. I needed that in the beginning as my son was young and I was afraid. I still call in emergencys, if my son is sick to get advice. I think that the endo, CDE and dietician are members of a team. With you and your son as the team leaders. We switched endo year before last because the first one was a *****:) She was judgemental, felt that she had the right to patronise and belittle me, she questioned my judgements and made it seem as if I were abusing my son because I was not interested in putting him on the pump. His A1C was 7.3 at the time she was insinuating this. Endos and doctors are their to serve US, not the other way around. I think people forget that sometime. They are paid very well for that service.
  11. juliemurphy101

    juliemurphy101 New Member

    Mar 18, 2010
    I am VERY new to this as my 6 years old was just dx 7 days ago. My endo has been wonderful and checks on him by phone every day. Surprisingly for such a large city I live in there is only one for children. But right from the beginning I was told that we had to figure out what "spikes" his sugar. I have learned alot by teaching ourselves and counting eveything carefully. You must take a leap of faith and keep on going. But yes, I am scared like anyone else out there, they are our children.
  12. joy orz

    joy orz Approved members

    Feb 7, 2008
    I think if you have a good team you get as much or as little support as you need.

    In the beginning, you need to have someone you can reach 24/7. As you get more confident, you can pull back.

    Ava's team will reply to my email within the day and if I call, within the hour.

    I don't think it's realistic to think your team will chase you down for the numbers, but if you send them in, they should be working closely with you to figure it out.
  13. Mikker

    Mikker Approved members

    Feb 23, 2009
    I wish we would have know better when our son was dx'd.

    J was in the hospital for 4 days at dx, then once he was released, we were on our own. We tried to contact our endo for adjustments, but it would generally take 2-3 days before anyone would call us back, and it was never our endo. Just her office staff relaying messages. Then, if we asked a question they weren't prepared to answer we would have to wait for another call back after they had the chance to confer with our endo again. We were never asked to provide any of his numbers, and were never given any type of contact information outside of the normal receptionists number.

    At times it's been really quite amusing. We finally get a call back from our endo's office and the office staff will sit there and act as a go between. We can hear her ask our endo the question, hear our endo reply, then her assistant will repeat it over the phone. God forbid our endo would actually put a phone to her ear. lol

    At the time, being so used to the same type of wait time when trying to contact our GP, I didn't think much of it.
  14. Gracie'sMom

    Gracie'sMom Approved members

    Aug 26, 2009
    My daughter is 9 and we have been dealing with D for almost two year (in about 2 weeks). It sounds like we get about the same support you get at our current endo. Our first endo was better at getting the #'s regularly and responding quickly, but they were so passive and under-aggressive that we ended up switching. These people have us do our own changes if we want. If we send #'s and they want to change something then they call us. The will return calls if we leave a message, though. I guess at the two year point they give me the support I usually feel I need. Most of the help we get is here!!!
  15. 2boysmom

    2boysmom Approved members

    Nov 2, 2009
    I feel like I get the support I need. In the beginning, numbers called in daily or questions answered. Same after pump start. Now, I call if I have question or can't figure out a pattern etc.

    The only thing I do not like is that I leave a message and whichever nurse practitioner is on "phone duty" will call back. There are some that I prefer over others.

    We see the NP every three months and endo once a year. I can also e-mail my NP if I want. I can always reach an endo on call 24/7.
  16. CheriMomTo8

    CheriMomTo8 Approved members

    Aug 20, 2009
    When dxd, we were in the hospital 3 days. Our endo was wonderful. She is very good with Maura, who though only 5, is always talked to first and never talked over. Our CDE in the hospital was also great, teaching us everything we needed to know. I think they would have gotten us a pump that day if we had wanted it. When we left we were to call that night, fax numbers the first week and call at any time. We would get the ped. endo on call. They even said they would worry if we didn't call with questions. We talked several times that week. We had lots of follow up appts then and after our pump start.

    I am not thrilled with the CDE we got for on going education. She taught us the basics of our pump and is very nice but does not really have the kind of info I want. I have learned more reading here and in books. We continue to be happy with our endo, they do have a very busy practice, we see her every three months. If I have questions or need help and call, a nurse always gets back to me quickly. It just seems to me with this disease you really have to educate yourself. As nice as everyone is and always available in an emergency, I have to pursue the latest info and technology. Our endo is always supportive-she is up on all the latest research, but we have to initiate and then she is happy to oblige. (pump, cgm etc)
  17. Snowbound

    Snowbound Approved members

    Jan 14, 2009
    Wow, that must have been tough. We've had the opposite experience. After diagnosis we got 2 days of training. The endo did an overview but all the detailed lessons came from the nursing staff and nutritionist. This included a large binder of information.

    We had a visiting nurse come in twice a day for a few days until we were comfortable doing the injections.

    There's always an endo on call 24/7. At first we would call about problems and making adjustments but quickly became comfortable with doing it ourselves. They're great, we've called in the middle of the night with illness/ketone issues and usually within 10 minutes we get a return call from one of the endos.

    Same thing when we switched to the pump. We went through training with the endo's staff, then spoke with the endo twice a day for the first couple of weeks until we got things stabalized.

    Now we do all adjustments ourselves, but if we had a problem we can call and get an timely response.
  18. Toni

    Toni Banned

    Sep 14, 2009
    Had issues with her re bedtime targets the first year or two (her targets are tight). I know now she has a good reason for that and these tight numbers were to preserve the honeymoon. She is very intelligent and open minded. Will go over and above-board when we need more strips, or cgms, then when we switched to Dexcom. Very familiar with the proper paperwork needed to get cgms. DN really likes her. She will often suggest two ways to handle a problem and let us try both. She is familiar with all the latest research and I can pick her brains on that if I need to. I now think she can do no wrong.
  19. frizzyrazzy

    frizzyrazzy Approved members

    Dec 23, 2006
    I think it comes down to this:
    Is your endo giving YOU what you need. Not how much support anyone else gets or needs, it's what you need. Some people are happy with little contact, even from the beginning, some like a lot more contact for years. It's all personal preference. there is no right or wrong with this.

    So,if you feel you need more from your endo, then you can express to them or you can search for another endo who's philosophies more closely match yours. Remember too, you won't be a "newbie" forever ;) What you need today might be vastly different from what you need 5 years from now, so don't discard your endo just for that. :)

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