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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. MEVsmom

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    Ours was similar. We were prepared to ask at our 7 month post diagnosis appointment. Before we had a chance, the CDE says, "so, are you ready to pump?". Here's some brochures. Look through them, call the reps if you want then call back and make the pre-pump psychology appointment. Then let Lindsay know what pump you want and we'll take care of contacting the rep and getting the paperwork. It was no fuss from then on. CDE called in our supply order and had it delivered to our house. They let Animas do their training and starts and the 6 week follow so up. They made it very clear up front that they had patients that used all of the pumps and it was entirely up to us. No training class, no saline start, no hassle.
     
  2. rgcainmd

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    This is my current plan of action: I have a few names of peds endos in the area who do not practice at our Big Name Diabetes Center where my daughter is currently receiving her care. At least one of them actually comes to the Pediatric Clinic in our suburb (where my daughter's pediatrician is located) once or twice a month. I'm going to speak with the physician who has been my daughter's pediatrician since the day she was born (who we absolutely love) and ask her opinion about this endo. (She's always been very honest with us). If she thinks s/he is OK, we'll transfer my daughter's care. I discussed this with my daughter, and she's in agreement with this plan. She admitted to me that she thought The Pump Lady was kind of weird and the pre-pump appointment kind of freaked her out. She didn't understand why TPL "dissed" the Dexcom so vehemently. I'd prefer not to have to go back to our current endo ever, but if this is necessary for my daughter to get her pump on schedule, then we'll have to bite the bullet and do it. My daughter made it clear that she's willing to endure a couple more appts. with The Pump Lady if it means she won't have to wait any longer for her pump. If I spoke with our local OmniPod rep, I'm wondering whether she'd be willing to arrange training at our pediatrician's office if she could verify that we had an appt. arranged in the near future with our new endo (whoever that ends up being)... All I know is that I want to get the hell away from our current Diabetes Center because it's been one negative experience after another. At first, I thought I was reading something between the lines that just wasn't there because I was in shock or whatever. And we had had a relatively positive experience during my daughter's hospitalization (the hospital is affiliated with and just across the street from our Diabetes Center). Plus I did my internship, residency, and chief residency at this very same teaching hospital, so I guess it still felt like a (dysfunctional) home to me on some level. I really tried to like our diabetes team and really made a solid effort to go with their flow, but in hindsight I should have pursued treatment for my daughter with another endo weeks ago. Thinking back over our experiences with "the team", I'm remembering more and more little things that I just blew off as non-issues at the time because I wasn't trusting my own feelings and intuitions as we had our hands so full with "welcoming" T1D into our lives. I so wanted to believe that the positives were outweighing the negatives and I felt like there must be something wrong with me if I wasn't thrilled with the care we were receiving from this well-respected Diabetes Center at this well-respected teaching hospital. But I can no longer ignore this decidedly bad taste in my mouth and I now realize that it is just a terribly bad fit between us and them, so we will go elsewhere. Wish us luck!
     
    Last edited: May 15, 2014
  3. Toterra

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    I can rather relate to the OP. Here in Ontario, Canada there seems to be a huge reluctance to even start talking about pumps in the first year and when I bring up a CGM, I might as well be talking about a trip to the moon. Right in front of me they put my son on the spot and told him negatives about the pump and then asked him if he wanted one. Of course being shy he just sort of withdrew. Very frustrating. My wife is not a big fan of my push to get on with a pump and CGM ASAP so I guess I am going to have to wait at least a year before my son gets what I feel is best. :(
     
  4. glko

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    Wow! I can't believe that anyone actually starts on a pump given the hoops that you are forced to jump through. Our pump experience was much different than yours. Our CDE/RN has type 1 herself and we started "pump talk" the day of my ds's first office visit. She deferred to us to do research and ask questions of her but she hesitated to even give us an opinion of which pump would be best for him (he is 10 and we were torn between Animas and TSlim, ultimately chose Animas because of the remote bolus feature which has been GREAT for him, but he is younger than your daughter). Because my dh is Type 1 and had used a medtronic pump in the past we had no saline period, just hooked him up and away we went after our 2 hour training. An Animas RN CDE did our trianing and also trained our school nurses on the pump.
    I also have to say don't feel a bit of guilt or have a second thought about changing endos based on your experiences. I also work at a very Big Name Medical Center in Minnesota but for various reasons we actually drive 90 miles for peds endo care for our son because dh and I agree that is where the best care is for him. And we haven't regretted it for one minute nor to I apologize to my friends and coworkers who work in peds endo at my workplace. For a few months we tried to change the system here and point out how they are not as patient friendly as they claim to be or strive to be but it fell on deaf ears and only left us feeling frustrated and more stressed out then we needed to be and did not change anything with "the system". I have no doubt that if ds was getting care here neither the Tslim nor the Animas would have been presented as an option and that 9 months in we would still be begging and pleading to be considered for a pump.
    Good luck on the pump start and CGM, I hope that you find a peds endo who will meet the needs of your child and family!
     
  5. Melissata

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    Take a day or two to think this new plan over. Leaving that practice is a no brainer, but you had the right plan in the first place. Don't settle just to get her on a pump asap. You may end up regretting it for the next 4 years.
     
  6. rgcainmd

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    Thank you for saying this. I've been trying to ignore this very thing in favor of getting my daughter her pump ASAP. It's so hard trying to convince an 11-year-old that waiting another few weeks or a month (in order to do our best to get the pump that is right for her) is not forever when she has this urgent need to take back some control. I feel like the way our soon-to-be-ex diabetes team handled my daughter's care took more control away from her (and me) than T1D itself!
     
  7. dianas

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    I agree with Mary here don't rush into your pump start unless you would be happy with Omnipod for the long haul and with no regrets. Taking a few more months now vs having to wait 4 more years for a pump that would be a better fit for your daughter may be a better choice in the long run.

    Get copies of all of your medical records and prepump training. You may not have to repeat everything when you transfer care and may not lose much time after all if you do this after transfer.

    Also I would pursue filing a complaint with customer service. Everything the pump lady said is true in that those are some of the negatives that come along with having a cgms. However her presentation wasn't done in a here are the pros and cons way it was done in a way that clearly showed she was biased against cgms and was trying to influence your or your daughter's opinion. That is a huge no no and very unprofessional. Same with the pumps also. If they will only prescribe certain brands of pumps without clear medical indications why x,y, and z are OK or not OK can't they also get in trouble too? I can't remover what that's called the Stark Amendment maybe?

    Sorry this has been so difficult.
     
  8. rgcainmd

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    MAJOR SWEAR WORD THAT WOULD BE REMOVED BY THE MODERATOR!!!!!!!!!!!!! Why does it have to be this way? Why?

    Deep breath!

    I took most of the day off work yesterday and today to go online, make some calls, and locate what looks to be a children's diabetes center that can't possibly be as bad as our current one. The way my source described their style of care sounds so much more in line with our particular needs. I stopped the delivery of our pump just in the nick of time before it got into the hands of our evil Pump Lady. (I'm not holding back any longer: I think she's effing nuts and I HATE her! We were better off before we met with her!) I contacted this center to schedule an appt. and was told I would need a referral (despite the fact that our not-so-crappy insurance doesn't require any referrals). Whatever; if that's the way they roll, I can't expect them to change their protocol for us. Then I thought "Oh, G_d, if we have to wait for Evil Diabetes Center to refer us, we're doomed." Thankfully, the receptionist told me that a referral from my daughter's regular pediatrician will suffice. I just now finished speaking with my daughter's pediatrician. I explained that I needed her to fax a referral to New Diabetes Center because it just wasn't a good match for us at Evil Diabetes Center and added that I had no more patience to deal with all the garbage surrounding getting my daughter a pump and all the hostility regarding using a CGM. Well, nice pediatrician is going to refer us. But she just had to add "You know my first name, I also have some real concerns about a child your daughter's age (she's ELEVEN EFFING YEARS OLD, YOU TWIT!) going on an insulin pump. I don't think you realize how difficult and confusing an insulin pump is." Why was that comment necessary?!? Congratulations to me for not telling her to stick her effing concern up her butt! I managed to force a "Thank you so much for agreeing to refer us to New Diabetes Center, I really appreciate it!" from between my clenched teeth before hanging up.

    We live in a damned suburb 52 whole damned miles away from the damned largest city in our damned state where I went to medical school, not the damned back woods of Siberia. Am I in crazy town? Are the parents on this Forum the only parents in the known universe who have their children on insulin pumps and/or CGMs? I realize that well under 50% of PWD utilize an insulin pump, but is it that freaking rare? I'm sick to death of all our providers treating me like I'm demanding that they transplant a monkey pancreas into my daughter. Why can't one effing provider say one effing thing that I want and need to hear...
     
  9. hawkeyegirl

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    Yes. You do appear to be living in CrazyTown! It just should not be that hard. I would not exactly call our endo progressive, but we got a pump easily 5 months after diagnosis, and a CGM two months after that at a time when virtually no one was using them on their kids. Down the road, we got an Omnipod when no one else was using one in the practice, and I know we were the first with a t:slim and Dexcom. My son was 3 at diagnosis, and my medical knowledge is limited to what I learned watching House (hint: it's never Lupus).

    I know you are probably reluctant to pull the "I'm an MD card," but at this point, I'd pull that card, politely and firmly. From now on, anyone giving you attitude gets the "I'm a doctor" tone of voice and pointed look. Come on - we all know that was a required class in year two. ;) Seriously, all of these people have been treating you like an idiot, and I have no idea why. I know you're not an endo, but neither is your damn pediatrician, and I'd put your diabetes knowledge up against his at this point every day of the week.

    So run to the new clinic with the referral, and don't let anyone give you any ****!
     
  10. MomofSweetOne

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    Does she have other T1s in her practice? And how much time does she have to listen to what it's really like to live with it in the house or how much the pumps and CGMs help kids to be independent? Eleven is the PERFECT age to start on both; you're going to need everything you can benefit from to maintain any semblance of control during puberty.

    The doctor we were seeing for the first 3 years seemed to think that we should be able to maintain a perfect 140, and she wasn't at all interested in the devices as we added them or how they helped us. The day she mentioned my daughter's weight gain THREE times in one appointment was the day I decided we were done. (My daughter is at an ideal BMI; she was just growing exceedingly fast, and her growth was actually outpacing her weight gain.) I hadn't realized how much stress that dr. relationship added to life until we met our new dr. who totally understands what life with T1 is like. `

    Definitely let your old endo know why you're switching. It might make things better for other newbies (and not-so newbies).
     
  11. missmakaliasmomma

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    I personally thought more than 50%of t1s would you use a pump.. Wow, Guess I was wrong. Two other girls from my daughters endo both use pumps, they're the only kids we know from There though. Our endo is pro pump but even so, our old endo, who absolutely sucked, was pro pump too. And holy crap, a pump is not rocket science. It's difficult until you get the hang of it but no where near being unmanageably hard.

    I think you're being too nice honestly. They'll walk all over you if you can be pushed over easily.
     
  12. Christopher

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    I respectfully and politely disagree. I think the OP is being civil and nice to get what she needs. In my opinion civility and courtesy have all but disappeared in our society and it is only getting worse. I'll stop there but I just wanted to let the OP know that I think it is commendable to remain civil even when inside you are seething and want to explode.
     
  13. sszyszkiewicz

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    Yep.

    Just do your thing rgcainmd.

    When things like that start getting to me, I think of a quote a friend of mine is famous for,

    "Opinions are like rear ends. Everyone has one....and most stink"

    (probably even this one)
     
  14. mmgirls

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    80% of the 3ish million T1d;s in the US are adults. I think this site majority pumps is a bit skewed.

    But just in the school that I am in right now as a sub, I have 5 kids, 2 pumps and 3 pens. of the peners where DX in October, but have no interest in going pump yet.
     
  15. mamattorney

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    I agree . . . deep breath!

    I can absolutely see your dilemma here, but i would urge you to slow down just a bit. I know you found another diabetes center, but I wanted to make sure that you knew that diabetes centers are not the only route you can take. You can go to a smaller practice, too. As long as you're changing, you may want to look at lots of different options. I totally want to change practices, but my daughter wants to stay where she's at. She likes the CDE we see and while I don't like the "big practice" feel of where we go, I'm not running into roadblocks like you, so I'm OK with being less than 100% happy with where we go.

    I know your desire to get a pump is paramount this time, but even if you go to this new place in order to get your daughter the pump you want, if you don't LOVE the new place, keep researching and keep looking.
     
  16. susanlindstrom16

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    I'm sorry that you are dealing with this, but you made me laugh out loud with that one!
    Our endo's provided us all the information on the various pumps and let us take the lead when we were ready. I can't imagine why they are giving you this much grief!
     
  17. Melissata

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    Most of you probably don't realize that this issue is not just with the ped endo's. A couple of years ago I took my daughter to an adult endo that flat out told me on the first visit that she couldn't have my daughter as a patient because she only deals with Minimed pumps, and she was on the Omnipod. I was floored, but told her that I didn't need any help with the pump. I just needed an endo because her new GP didn't treat type 1. The one that we go to now doesn't take her Medicaid, so I am changing her back to a family practice that does treat type 1. Smaller is better in my opinion. You are just a number at the big practices.
     
  18. MomofSweetOne

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    It really depends upon the team you get within the big practices. We've had the best of the best as well as some bad experiences. Finding a fit is important.

    The d-team aspect does either relieve or add stress to life with d, that's for sure.
     
  19. sincity2003

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    Yes, I completely agree with this! We are with a huge practice about 90 minutes away from us (we are in the middle of 2 large children's hospitals and at diagnosis chose this one). We have never felt like just a number. We have one CDE that we don't particularly care for and it's a personality thing (she doesn't have one), but we've always felt like we had their full attention when needed. DS' doctor is quite old, compared to the other 3 doctors in the practice and we've discussed what we are going to do when/if he retires (he has to at some point and DS has 9 more years with a ped. endo), and we decided that as long as they have the same CDEs, and DS is still comfortable, we will continue to use this practice.
    If we ever got pushback like the OP, we'd be gone in a heartbeat. We are currently looking into changing DS' GI doctor because even though they are in the same hospital group as his endo, their office doesn't run anywhere near as smooth and you are just a number.
     
  20. Beach bum

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