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Hmmmm, Should I Take Any Action?

Discussion in 'Parents of Children with Type 1' started by rgcainmd, May 14, 2014.

  1. rgcainmd

    rgcainmd Approved members

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    Got an interesting phone call from our Tandem rep (or should I say our ex-Tandem rep) earlier today.

    In the way of background info, my daughter (and I) had her "Pre-Pump" appt. on April 30. For those of you who haven't read my long-winded account of the event, let me summarize:

    1. I had to essentially beg and plead (multiple phone calls and carefully worded emails) to get this appt. before my daughter reached the 6-month post-dx mark.

    2. Day prior to this appt. I telephoned daughter's endo with a request that our family be viewed as if I were a single parent because my husband cannot/will not help manage our daughter's T1D, and great pressure was being placed on me by my daughter's diabetes team to "get him more involved" to the point that I was told "no husband, no pump." Request granted by endo.:)

    3. During same phone convo, I expressed my concern that this "pre-pump" appt. would consist of showing us pumps, telling us about pumps, etc. and that we would be given another pump appt. in 3+ months. Endo suggested that I write what essentially turned out to be a Ph.D. dissertation assuring the (I call her "The Pump Lady" or "TPL" for short) that I know what T1D is, including its pathophysiology and etiology, that I am an expert at managing my daughter's T1D via MDI, that I already know everything about pumping, and what my "contingency" plans were when things go wrong, AND "guarantees" I would put in place to insure that nothing would go wrong. 5 hours (during which I desperately needed to sleep) later, my "dissertation" was complete.

    On to April 30. Arrived at appt. on time with daughter. Husband sent off to nearest Kinkos with flash drive containing My Daughter's Autoimmune System Effed Up and I'm Still a Pancreas in Training: How I Will Avoid Causing a Fatal Hypoglycemic Episode or Instantaneous DKA While Using an Insulin Pump by Me to print up because I was up half the night writing it and our home printer wasn't working. Daughter and I had already started our appt. with The Pump Lady and a receptionist knocked on the door and presented me with the freshly printed (still warm) dissertation to present to TPL. Started to hand it to TPL and she asked what I was handing her. I explained that daughter's endo advised me to write this. TPL said she had no idea what endo was talking about and that I should just keep it because she didn't want to see it. (Someone give me back those 5 hours of my life!) Daughter and I politely and attentively listened to TPL tell us all about different pumps, their features, etc. I (very respectfully and deferentially) explained that I had been researching insulin pumps beginning 3 hours after my daughter's dx (not a lie), including speaking with reps, coming to this forum and reading absolutely everything ever posted here about pumps, reading articles from well-respected and peer-reviewed medical journals, speaking IRL with another mom of a child with T1D who is using a pump, and reading Pumping Insulin and Think Life a Pancreas. No, I do not consider myself a pump expert just because I am a physician and because I devoted many, many hours to educating myself about insulin pumps. But I think I know enough to make an informed decision about which pump to choose and to reassure TPL that my daughter was in hands as safe as the next parent's whose child was about to begin pumping. I also told TPL that we had initially chosen the OmniPod for various reasons, but had changed our minds after getting some excellent advice from other parents on this Forum to get a tubed pump and then "Cut the Cord" to get the pump we truly wanted (The POD) for only $200 or so out of pocket, just in case my daughter and The Pod could not establish a mutually agreeable working relationship and/or because doing it this way would provide us with a "back-up" pump in the event we would need one. The tubed pump we chose (once again after much research by me) was the t-Slim. Well, this did not go over well. According to TPL, the t-Slim is "not really a children's pump" for various reasons, not all of which I can recall at this point in time but which did include the whole no reverse-correct issue. Additionally, TPL told me that that's not the way the "Cut the Cord" program worked and that our insurance company would never cover the cost of supplies for both pumps. I attempted to explain to her what I was told on this Forum: that our insurance would cover either supplies for the t-Slim (or other tubed pump) or pods (after I purchased the OmniPod PDM out-of-pocket) but not both at the same time. No problem, right? So I couldn't (and still don't) understand the problem she was presenting. Soon I could tell that I was speaking to deaf Pump Lady ears and realized that if I wanted my daughter to get an insulin pump before she turns 20 (she is currently 11 years old), I would need to agree with everything TPL had to say. And I did, and my tongue was bleeding (because I bit it so many times) by the end of our appointment. So we chose the OmniPod primarily because there was no way in heck TPL would give her blessing in order for our endo to OK a lovely t-Slim for my daughter. The next surprise occurred after I told TPL that our endo had signed the paperwork necessary for us to get a :angel:Dexcom:angel: and that it was in the loving hands of the USPS as we spoke. (It arrived the very next day:)). I must add that I did all of the "legwork" save signing the damned paper in order to get our Dexcom and to this day firmly believe that our endo signed the paper accidentally when she was signing a huge stack of papers that needed her signature. (I did not tell TPL this last little bit.) TPL proceeded to look at me like I had just announced that I was withdrawing my daughter from school so she could work in the fields picking fruit in order to supplement our family's income. She said (and I paraphrase) "I'm wondering why you think a CGM would be useful?" and (turning to my daughter) "Do you really want a CGM because you'd have to carry around that thing in addition to your insulin pump?" My daughter turned to me with a look of utter confusion in her eyes (in addition to tears), so I quickly mumbled something like "I'll just send it back without opening it and hope I can get reimbursed the copay."

    The Good News: TPL bestowed her blessing on the OmniPod and our endo signed the papers and my daughter will embark on a dreaded saline start on June 3 followed by pumping with gas, I mean insulin, on June 5. I originally planned on ripping that saline-filled Pod off my daughter's arm upon our arrival home and replacing it with a Humalog-filled Pod, but I learned many years ago not to cut off my nose to spite my face. (The Pump Lady would know. I don't know how, but I just know that she'd know and I know that she would punish us somehow some way some day.)

    The Relatively Bad News: We will not have our much-desired t-Slim for back-up purposes or for "real" purposes in the event that the OmniPod is not a good fit for my daughter. And we are (ecstatically) using a Dexcom behind our diabetes clinic's back. I will remove my daughter's Dexcom sensor and all traces thereof right before her saline start so as not to piss off The Pump Lady. After that Pod filled with honest-to-goodness insulin is attached to my daughter two days later, back on goes the Dexcom. (Again, I don't want to deal with any passive-aggressive retaliatory bullcrap that I fear would transpire if my daughter showed up sporting her pretty pink Dexcom.)

    The Actual Bad News: While I thought my daughter trusted me implicitly regarding the management of her T1D because I'm a pretty decent mom and because our State's Medical Board has not revoked or limited my license to practice medicine in any way, shape, or form since I was initially licensed in 1993, The Pump Lady has caused my daughter to question whether I know what I'm doing because this Pump Lady at this Big Name Diabetes Center where my daughter receives her diabetes care said quite a few things that were significantly and markedly different from what I told my daughter about CGMs and pumps. This both saddens and pisses me off.

    Finally, onto the interesting part of this too-long post. Our extremely helpful (as in bent-over-so-backwards-that-she-could-look-upside-down-at-her-own-belly button) Tandem rep phoned me today to ask about our plans to acquire a t-Slim. I reluctantly (and with much guilt over the groundwork she had already done for us) told her that we had decided to join The Pod People. She went on to say that she had to watch her words because our conversation was being recorded (probably for "quality assurance" purposes, no doubt:confused:) BUT she already knew that I was going to say what I said before I said it. Because, based on her experience and the experience of other pump company rep friends of hers, our Pump Lady (and I paraphrase because I do not have access to our recorded conversation) rules the roost at our Big Name Diabetes Center and the MDs do not sign off on any device that The Pump Lady does not first approve because they know better than to incur the wrath of The Pump Lady. And for reasons not entirely clear to our very nice Tandem rep, The Pump Lady hates the t-Slim. And the Dexcom CGM. And all other (isn't there only one other?) CGMs.

    What I have written above is the (very minimally-exaggerated) honest-to-G_d truth. For perhaps the first time in my life I am speechless. Almost. I am seeking your advice on whether I should act on the above, and if so, some suggestions on how to proceed would be greatly appreciated.
     
    Last edited: May 14, 2014
  2. sincity2003

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    Wow. Just. Wow.
    I'd find another endo office and cancel that OmniPod order stat.
     
  3. miss_behave

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    I second this ^^
     
  4. cdninct

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    A third vote for run, don't walk, away. What are TPL's credentials that give her the right to bully a parent clearly qualified to choose her kid's pump and an entire team of endos? I'd call the endo, tell him you were treated poorly, and demand that he sign off on the t-slim or you will be going elsewhere!

    ETA: is the t-slim approved for pediatric use? As long as it is, I'd go in fighting. I don't know what I'd do if it isn't, as I know exactly how the conversation would go. It shouldn't make a difference really, but that is what they would point to...
     
  5. mamattorney

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    Yes, you should take action if you want a t:slim, which it seemed like you did (along with omnipod cut the cord) before you went to your appointment.

    Unfortunately, I don't think you are alone in the "endo office picks the pump" scenario. One of the more popular endos in the suburbs by me (not the one we go to) is almost strictly Medtronic. People look at me like I have two heads when I say my daughter uses t:slim and dexcom. They all use Medtronic and,now, Enlite. I think it's fine if you researched, trialed and decided that is what you want, but to have the decision made for you without choice is unfortunate in my opinion.
     
  6. cdninct

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    Just to give you some perspective on how things could go, our CDE gave us the pump brochures at our 1-week follow-up appointment, and we talked briefly at the 2-month appointment (but DH wasn't on board yet). Before the 5-month appointment we made our decision. We went in that day, and said we had chosen the Revel. CDE asked us what colour we would like, filled in the paperwork immediately, got the endo to sign off, and submitted it that afternoon. We got the call the next day from Medtronic saying that it had gone through our insurance and it would be sent out in 2 days. The pump trainer showed up at our house on a Saturday morning one week later, and we went live that day. No pump classes, no saline, no having to prove ourselves, no fuss, no hassle. Just intelligent adults treating other people like intelligent adults. I know we have had a better-than-average experience, but I just wanted to let you know that it is possible to find a supportive team!
     
  7. Sarah Maddie's Mom

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    Our first pump start was not unlike this ^ and that was 10 years ago when pumping was rather less common.
     
  8. caspi

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    I would call your insurance company first thing in the morning and tell them not to process any claims for the Omnipod. Simply tell them there's been a miscommunication (they don't need to know all the facts). Then call your Omnipod rep and tell them the same thing. Then find another endo. Period.
     
  9. nanhsot

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    Yes. You should act. You should halt all activity and you should get what you want. Remember. They work for YOU. That's all you need to know. You are the consumer. Buy what you need, don't take anything less.
     
  10. virgo39

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    I would also encourage you to pursue your first choice. Our endo practice primarily uses Medtronic. I was told that "all" of the lead endo's patients use the Medtronic pump. No one from the practice, including DD's endo, objected or presented any impediment to our getting the Omnipod. Because DD was 5 at pump start, the practice had the first 24 hours under observation at the hospital, where we were visited by the lead endo, who said nothing negative about our choice and was completely supportive.
     
  11. Jordansmom

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    I agree in principle that you should run, not walk, away from your endo. I would never have agreed to the Omnipod as your only pump, when the cut the cord option allows you to own two pumps. That's a $6,000/ 4 year decision that affects your child's health and quality of life. That is your decision to make and yours alone.

    However, I also remember how incredibly desperate my DD was to start pumping and I would have slit my wrists and bled for our "pump lady" if that's what I needed to do to get our pump. And realistically walking away from the process and your current endo's office could delay your DDs pump start for a very long time. It might take 4-5 months to get into a new endo and then they might have their own ridiculous pump start procedure that takes months of appointments to complete. Is there any way for you to get more inside info about the Endo's in your area? We have a couple of options where we are and some of them have a reputation for being very up to date with technology and helpful, and others are known to be very set in their ways and difficult to deal with.

    You're in a really tough spot. If it were me I absolutely would not get pushed into the Omnipod as the primary pump, but I don't think I'd dare leave my Endo until after pump start. Good luck whatever you decide.
     
  12. cdninct

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    We are talking about the same clinic, n'est pas? :)
     
  13. Sarah Maddie's Mom

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    We were still with Yale for the Cozmo start.
     
  14. Michelle'sMom

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    TPL & I would not get along. And the endo & clinic administrator would hear about it.

    I asked the endo about his pump preferences at our first appt. He told me he wasn't the one paying for it or using it, so he had no preference. If he had pushed us to a particular brand it would've been our last appt.
     
  15. MomofSweetOne

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    It sounds like time to talk to both your endo and Customer Service of your hospital/clinic. It's unfortunate that clinic politics add yet another dimension of stress to life with T1, but at times, it does. I'm not sure I'd quit the endo without talking to him/her and seeing what can be signed off on without pump-lady's approval. It may be that they're only marginally aware of what is happening - or that they may need documentation of it in order to address it.
     
  16. mmgirls

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    who is actually signing the RX's???

    TPL or the endo?do you want to try to stay with the endo? If so.

    I would go to the endo and say that you felt that you were given a biased and uniformed view of the possible options for pumps and that you felt that you were not given much choice at the time, but now that you have had time to reflect, that you want to pump with t:slim and intend to do cut the cord to also try out the Omnipod. I would also head off an issue with the t:sim not being a pump for kids with the fact that you have never pumped before and while you know about the "no reverse correction issue' That is not an issue for a new pumper, that it is still 100 times better than MDI.
     
  17. Ali

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    I have to say this but you are an MD right? I just do not know why you are not calling another general practitioner or Endo to work with. As a physician you would not allow someone in your own office to dictate the way the pump lady did. Almost anyone can write a prescription for a pump and the supplies. Find someone to do what you want, you do not need classes, and then find another Endo you want to work with or a good pediatrician or a good family doc. My father as a Dr, my relatives who are Drs, none of them allowed the type of BS you are allowing from other health care workers. Frankly I have to assume you are in shock. The paper you wrote you most realize is insane. I assume you are still in shock or maybe have other stuff going on.
    Good luck. Ali
     
    Last edited: May 15, 2014
  18. Beach bum

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    We had essentially the same experience 8 years ago. But, with Animas and at the time the rep said "if you order by 12/31" you will also get a free iPod. I did, and we had the pump in a week. So yes, you can have a good experience with choosing a pump and get the support of your endo. In fact, at our practice, our endos/nurses can only give you info and tell you what they like/dislike about the pump. They can't say yes or no to a pump (obviously they can veto for other reasons, but because they don't like it doesn't work).
     
  19. sincity2003

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    I wanted to come back now that I'm not in shock over what has been done to you and tell you about our experience. We went to our pump class and they had the Medtronic 530 (I think, we didn't pay much attention to it and they didn't spend much time on it because they said they had reports of customer service issues), the Animas Ping, the T-slim and the Omnipod. They went through how each one worked, passed them around to let us see them, touch them, study them. The CDE then had each parent/kid pick what they were leaning towards and, unless it was the Omnipod, she put a test site on them. We left that class with DS wearing a pink Animas Ping site (that's all she had left LOL).
    Through conversations, we changed our mind to OmniPod and that's what we ordered as our primary pump. They signed off on the paperwork and we had it within a week. Fast forward 2 months, you can read all about our horrible OmniPod experience here on the board if you want, and we ended up with an Animas Ping. Different CDE did our Ping training and as we were talking, she let me know that they don't prefer the OmniPod as the primary pump, but they aren't allowed to tell you what to get/not get. They are only allowed to present the features of each pump so that it doesn't come across as them steering you towards one or another. I told her I wished someone had said something, in some way, because DS wanted the Ping and we, as his parents, talked him into the OmniPod.

    Anyway, all that to say, it was completely our choice when we went in. There was no one saying you can only have X pump because that's all we approve of. And while we didn't get the pod for $199 (we paid almost $1,000 for it), we do still have it and DS is talking about wearing it this summer for swimming, so we'll see how that goes. If we hadn't gotten the Ping, he would have gone back on MDI though (his words).
     
  20. ksartain

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    My pump experience with my endo was this:

    Me: We would like info on the pump.
    Endo: Sounds great. Here are some brochures. Research them and let us know which one you want.
    Me: Thanks!

    One week later...
    Me (on the phone): I would like to get Chris started on the Omnipod.
    Endo: Awesome! Fax us the paperwork and we'll get it out within 24 hours to your insurance company. They will contact you to go over the payment. Once you receive the pump, call our office to schedule a pump education and that day, you'll be ready to start your pump.
    Me: Great! Thanks!

    That's how it should be. I agree with everyone else. This doctor is supposed to work WITH you, not tell you what to do. Wow.
     

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