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Big Endo Practices: Impersonal? How Would You Take this Email?

Discussion in 'Parents of Children with Type 1' started by sszyszkiewicz, May 2, 2014.

  1. sszyszkiewicz

    sszyszkiewicz Approved members

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    After diagnosis we stayed with the Childrens Hospital nearby for their diabetes/endo practices. The Dr's in the PICU were terrific. They in fact saved my sons life. Now we have transitioned to the folks that sort of watch over us, and the experience has been less pleasant. For example, it took the better part of a month to get the paperwork necessary aligned with Dexcom to get the dex that arrived last week. Yes we faxed. No you didn't. Yes we faxed it. You forgot to sign it. Yes we faxed it. It had the wrong patient on the form etc... all the characteristics of "bigness" which translates to "busyness" which (I think) translates to email exchanges like this......

    First a nice thank you from me to them (even after almost a month of missed communication between them and Dexcom).

    From: Stephen Szyszkiewicz
    Sent: Thursday, May 01, 2014 10:25 PM
    To: xxxxxxx
    Subject: Dexcom Data

    I wanted to thank you guys for helping us get the CGM device. He did the insertion and he barely knows it is there. The only alarm we have set is a low less than 70. Based on his fingersticks, it has been pretty accurate. When calibrating it is often within 5 of his meter. The first night it was off quite a bit but I got it in line by the next morning after 4 calibrations. One at 10PM, 11:30PM, 1:30AM, and then finally 7AM the next morning.

    Attached is an hourly report from the Dexcom! I have some computer sense and a bit of a stats background so these reports are really terrific.

    These last 4 days he has been a little high between 8 and 11.....right in the middle of the school day. But its breakfast at 7, morning snack at 10, and lunch at 12. After that though, he typically comes home on the verge of a low and then stays flat the rest of the day.

    He is 6 units Lantus taken at night
    10 to 1 carb ratio
    75 to 1 correction factor
    ~ 6 months post diagnosis

    So thank you again.

    Steve Szyszkiewicz


    and then this response.....

    Hi Steve,
    I'm glad that you received the sensor and are so excited to have him start on it. Thank you for sending his report from the first week. In looking at his report, I don't see any critical changes that need to be made. Our system is set up to provide you with education and support with sensor technology in order to equip you to with the knowledge to read the reports and make decisions regarding changes that may be needed. In order to accomplish this learning, we recommend that families meet with one of our diabetes educators when starting on a Sensor and about a month after initiation to learn about interpreting the reports. This allows for our office to be familiar with the settings on the sensor and better understand [DS's] reports and needs. Unfortunately, until this requirement is met, I won't be able to evaluate reports and recommend changes. Please call xxxxxxxx at yyyyyyyyyy to set up these two appointments. I do apologize if this information was not clearly communicated, I did think we discussed it and I provided you with xxxx's contact information


    (names and numbers redacted to protect privacy)

    So I am considering that email. First of all during the last visit they only told us about one training session, not two. They *never* said they would not look at the reports until we are trained. They did make it a point to tell us they would not even schedule the training until we had the device in hand. Now they are telling us the training cannot happen for a month, oh and by the way until we are trained we are not going to look at your data (!!!!).

    So the question I have for everyone is, is your endo this....distant. I mean I think there needs to be a bit of an attachment here. At some point my son is one of many, but to me he is my son! Are you seriously not going to look at Dexcom reports until after we get trained and we are not going to train you for a month? Really?? I read the above email and I think to myself, "that is idiotic", but emails (like bulletin boards) can be interpretted incorrectly.

    So I am looking for what others think. Is your endo practice so big that it gets really impersonal in a hurry. How would you take the above exchange?
     
  2. Michelle'sMom

    Michelle'sMom Approved members

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    Put simply, YES! We attend a very large, very busy endo clinic attached a very large, very busy children's hospital. The only contact is via fax & phone. In 4 1/2 yrs, with the exception of a single visit, we've seen a different CDE at each visit. They don't download meters, pumps or CGMS, & showed no interest in the Dex reports I took to our first post-Dex visit, so I don't bother. We make an appearance for Rx renewals (now every 3 months despite our appts being every 4 months) & lab orders. We only continue to use them because we have no problems getting orders for what we need.
     
  3. DavidN

    DavidN Approved members

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    This seems asinine to me. I read his reasoning but it doesn't make much sense. Getting to know the settings on your sensor? Whah? I'd be annoyed too.
     
  4. KatieSue

    KatieSue Approved members

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    We also go to a larger practice at a children's hospital. We trained ourselves on the dexcom. They never ask us for reports nor download at appointments only the meter. A couple of months ago I emailed the pump nurses as we were having some wonky numbers that I wanted another set of eyes for. I asked in what form they wanted her dexcom reports and they said they didn't use them just the meter.

    We basically go every 4 months for our A1C and prescriptions. We did look at moving to a smaller practice but they didn't take our insurance so we stayed. She just turned 18 so we're now looking at possibly moving to an adult endo. We don't need a lot of support but I do think we could use some help improving and apparently at our practice we're model patients compared to others so we just get a pat on the back and see you in 4 months.
     
  5. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    Putting aside the specifics of the email - your kid is now 12, right? Soon, if not already, the CDE/Endo will begin (should begin) to shift from a mom and Dad centric appointment to more one-on-one with your kid. Imho having a positive relationship with the endo, one of trust and one with good communication and above all individual appreciation of the unique particulars of the kid, is vital to getting through the quarterly drudgery of the office visits. Which, in turn, aids the day to day independent care that he'll begin to be doing.

    I would ask myself, is this a practice that my 14 year old can visit with some level of confidence that he will receive individualized, thoughtful attention Or is it like so many large hospital/University affiliated practices, more a number mill?
     
  6. RomeoEcho

    RomeoEcho Approved members

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    I'd like to offer a different perspective.

    You may be adequately self-educated. You may have the statistical mind that feeds on this information. Most people are not. If all of those people wanted advice without doing the training, this would be a huge drain on resources. They would spend all of their time dealing with simple things that the parents would be able to do themselves if they would do the training. If they did, they would then not have time to deal with the more detailed and complicated things that would actually benefit from their time. They would not have time for your son. I'm sure you want them to make an exception for you, but so would everyone else. From a big picture perspective, I don't think it's so idiotic.

    It is your decision where you want to go for your child's care. I decided to go with a very large practice, which I travel large distances for. For me, I would rather have medical care by the best than personal attention by someone I have to keep educating about the latest technology. My doctor told me a long time ago that it was his job to teach me everything he knows so that I can do it all myself. I now see him approximately annually and have not been given specific advice on numbers/doseages in many years. This is what is right for me. You will need to decide if it is right for your family.
     
  7. sincity2003

    sincity2003 Approved members

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    My DS goes to a what I consider a large endo practice attached to a very large, well known children's hospital where we live. I did not realize until we started dealing with the pediatric GI practice in this same group how good we have it with the endo office. I can email and receive a response within 4 hours or less. We have 3 CDEs, one met us at the hospital at diagnosis and that's who we dealt with until she went out on maternity leave in February, 95% of the time. The second one is our least favorite and we've actually requested that she not deal with our son. The third, who has turned out to be my favorite by far, because she has a child with Type 1 who participates in the same activities as my DS, and we've now attended 2 family weekends together, is who I always email with questions/concerns/just general good news. She's also the one that I can relate to the best, probably because of our children and the time spent together outside the practice.

    When we got our Dexcom, we did have to go in for training and we did go back 30 days later to see how things were going. Considering it's an hour and 40 minute drive each way, it's an all day affair, and I just chalked it up to something we had to do. The other thing is, they always have us send his pump numbers the night before his appointment and they download his Dexcom while we are there and they look at that too. There are 4 endos in this practice, and my son's is the oldest by far (he's 67 years old). I do worry about what happens when he retires; however, since the same CDEs will be in the practice, I am sure we will be okay.

    I'm sorry that some of you feel like you are more a number than a patient. We usually are at our appointments for 2-3 hours, some of that is wait time, some of that is time with the CDE and some of that is time with the doctor, but because we get individualized attention and they answer all my questions without rushing me, I don't mind it at all. We are finally at 3 month appointments, which does help tremendously though.
     
  8. Cheetah-cub

    Cheetah-cub Approved members

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    Hi Steve,

    I wasn't going to write you a response at first. We too go to an endo clinic within a large children's hospital. But our experience with them has been excellent, and I was a bit concerned that raving about our diabetes team might not make your feel any better.

    I am dismayed by the email response that you got. Then I thought about it some more, and thought perhaps it is just the attitude of this one person who responded to you. He/she does not understand the psyche of a T1D family, or is simply lacking in compassion. We can be pretty excited with every mile stone in our T1D journey. It is rather bitter sweet to think about how excited we were to get our pump, and to get our Dexcom.

    My 10-year-old was diagnosed about a week behind you in early December, and we started on our Dexcom in mid April.

    The experience I have to share with you is a good one: I too, happily sent off our first Dexcom report to our endo RN. I thought it was a "good" report, and was just hoping to get congratulated on. Instead, I got a call from her, and later that evening I got a call from our doctor. They were concerned about the number of our lows, (because my 10-year-old does not feel the lows). And they scheduled for us to come in that following Monday, and they downloaded all sorts of our reports, both our Dexcom and PDM, and they adjusted our pump settings for us.

    Of course, the doctors have many patients, but I appreciate to be treated as if we are the only one.

    You would not feel this bummed, if the person who responded had simply congratulated you, told you the report looked okay and to schedule an appt for Dexcom sensor training with an educator next. (We have a Dexcom senor training coming up later in May). Do schedule that sensor training.

    Hopefully, this is just this one person's personality (to be avoided in the future), and not the attitude of the entire team at the clinic. Otherwise, you might want to consider your options to locate another medical team to look after your son.
     
  9. cookbookmom

    cookbookmom New Member

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    We do know they have a training backlog, which is frustrating because they told us that we could not even call to schedule the training until we had the Dexcom in our hands. I called the second FedEx delivered it on Monday and left a message. On Wednesday, when I had no call back after a full business day, I sent an email. I never got a reply to either, but Steve received an email Friday telling him that they're behind in tech training so it won't be until late May or early June.
    Well, that Dexcom is out of the box and has been since Steve came home from work Monday. There's no way it's going back in.

    The email conversation Steve quoted above was between him and our CRNP. We hardly ever see the endocrinologist. It's all the nurse practitioner, and she made it fairly clear at our March appointment that since our child had an excellent A1C, she wasn't recommending us for a Dexcom. If it had been 8 or above, she would push for it. That idea still bothers me--she was telling us that we are doing too good of a job keeping our son's diabetes under control to be recommended for technology that would help us with that? All this time I thought that proving we were compliant with his regimen and record-keeping would help us out with things like this.

    I also feel like the CRNP isn't happy that we took an end run around her and pushed for that Dexcom, since it wasn't her idea, and that email from the other day is indicative of same.

    My frustration with the whole thing is that you never get to call and talk to a person. It's a blind email to the whole department and you hope someone sorts it properly. Same with phone calls.
     
  10. sszyszkiewicz

    sszyszkiewicz Approved members

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    Thanks everyone for their perspectives. I think, actually, all of you are right.

    As I was thinking about this over the past day, the one thing I realized is that I am expecting more than basic care and I need to let the team there know that. At our last appointment, the one statistic they mentioned that they are measured against is the count of patients who do not wind up being readmitted with DKA. I guess at some level that is a good thing to measure against, but I have more at stake here than just that statistic. Keeping a kid out of DKA seems like a minimum standard to me.

    I have not lived my life, personally and professionally based on minimum standards. When it comes to D, that sentiement is doubled.

    So i think I need to have a conversation with them.
     
  11. rgcainmd

    rgcainmd Approved members

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    Stephen, if you weren't in New Jersey, I'd swear that we are going to the same diabetes center! Overall, I suspect that I'd be even less happy with the follow-up care we'd receive if we "bought local" and saw a private practice endo in the Great Wasteland of a town where we currently reside. But several things that have been said to my daughter (and myself on separate occasions) have made me roll my eyes and say "WTF?" inside my head. (e.g.: Pump Lady asked me what possible advantage I thought a CGM might provide and asked my daughter if it was worth it to have to carry around one more thing. Also, the hoops I continue to jump through [with our diabetes team] in order to get my daughter pumping. We got a Dexcom essentially on our own: I did all the phone calls, insurance coverage, faxing, etc. and I think our endo "accidentally" signed the paperwork because it was in a huge pile of stuff she had to sign that day. I'm pretty sure they have no idea we are utilizing this "questionably useful" piece of terrific technology!)
     
  12. SarahKelly

    SarahKelly Approved members

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    Let us know how this conversation goes.
    We have been having similar issues with our sons large endocrinology clinic. I know that they believe that we are according to the nurses doing "top notch diabetes care," however we are not having smooth sailing or anything near smooth. I could list the errors that have been made and the steps we've taken, but really it comes down to the fact that our family has high expectations for care and like you do not live our lives based on minimum standards. To me that is sub par...so, I hope that your team hears you honestly and is able to make changes to your childs care that will be greatly beneficial. I think if I knew we had to go more than every 4 months we'd be looking for a new team sooner, but instead it is part of our summer plan...new pump, new team.
     
  13. kvnc

    kvnc Approved members

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    This was our experience too!
     
  14. mom2Hanna

    mom2Hanna Approved members

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    I have my daughters endos email and she gets back to me within 24 hrs. She would never make me jump thru stupid hoops for help. I go to a large university practice, but we have a relationship with a specific dr and mostly see only her. My daughter loves her. When she was on maternity leave, we saw another dr and my daughter really liked her too. Ironically she hates the lead doc in the practice, who is a famous and accomplished diabetes researcher because the one time she met him, he made a joke about her A1c and she has no sense of humor. I really liked him though.

    I met a mom of a newly dxd 10 yr old last week who goes to the other large practice in our state and she told me that she felt like they really didn't like her calling. This is a mom whose child was dxd beginning of April, she is one month in and feels like her drs don't want to talk to her. How awful.
     

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