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Getting Discouraged about pumping

Discussion in 'Parents of Children with Type 1' started by Justme-Stephanie, May 17, 2014.

  1. Justme-Stephanie

    Justme-Stephanie Approved members

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    We have only been pumping since 4/9/14 with revel 723, and after our last doctors appointment(5/14/14) i'm ready to call it quits, I hate our doctor!!!!

    I pretty sure doctors are supposed to listen to our concerns, and assist if assistance is needed. here is what our experience was this week...

    first issue...after starting pumping DD has been testing a bit more due to lows, highs, and unknowns, I requested a change in her prescription to get some more test strips because we are running out within 3 weeks of getting them, our doctor was very confrontational about it and said we are testing too much, that she should only need to test breakfast, lunch, dinner,2 hours after each meal, bedtime, and 3 am. So my question to him was... what about when she feels high or low, which is happening all day long, or when her BG is 50 and shes had a juice, we aren't supposed to check to make sure she is coming back up? He flat out ignored my questions and moved on.

    Second...our first shipment of infusion sets and reservoirs was 20 of each, which came just days before our pump start, so knowing she will be at school and at her Dads a few days a week, I left some at each place, thinking that is what insurance would pay for each month, which left us with 15 or so. after calling medtronics to place our order for May we found out that Our insurance only allows for monthly billing, and with her having state medical as a secondary insurance it is taking every bit of 14 day to process. Since her prescription is wrote as changing every 3 days our insurance will only allow 10 sets a month, and our first shipment was for 2 months, which shouldnt have been able to process, so our next shipment will ship the end of may, We have had a few issues with kinks or just oops's and 2 I have no idea, lets just change it. 10 sets a month, that leaves no room for error, is there anyone who has only used 10 a month? I asked the doctor to change her prescription to allow for some extras, His response was..."the fact that you left some at other places is a personal issue and I can not help with personal issues" and walked away. We have had to use the ones that were left at these places already, I requested some samples from medtronics just to try them and see if she liked them, so that how we are getting through the rest of the month. we are on such a limited income that if we cannot be 100% covered by insurance we will have to quit the pump

    Third...I asked the about decreasing her basal and increasing her carb ratio, she is food spiking horribly, 2 hours after meals she is 300-400 but 4 hours after meals she is on the high side but almost good, i was thinking a lower carb ratio would almost fix this issue, Doctor literally started talking over the top of me and wouldn't listen, basically dismissing me.

    Really!?!?! Im putting my daughters life in your hands and you cant even listen to my concerns!!!

    Forth...I haven't slept in weeks due to BG checks at night from highs and lows, I feel that this would help with the night time, I have done tons of research and felt that the pros outweigh the cons, and which brand i felt would be the best...so i asked...According to the doctor, it is his decisions and he felt it was not in our best interest, and the fact that i wanted a dexcom was un-thinkable, but just to humor me, he would have the medtronics rep call me. I know we have a medtronics pump but that doesn't mean we have to have their CGM, Right?

    We do not have any pediatric endo's in the area, this one is an hour away, next one is over 2 hours away, but I'm almost ready to make those trips, just to see someone else...

    I know things will get better, and soon will even out but I'm almost at my wits end now!!!
     
  2. MomofSweetOne

    MomofSweetOne Approved members

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    Find a different endo asap. A longer drive is worth it. Your experience is horrible, and if he isn't willing to listen, it's not going to improve.

    Have you read Think Like A Pancreas or Pumping Insulin? I find it helpful for changing basal and I/C ratios and ISF. The sooner you can do it yourself, the better off your child will be.

    I would talk to your Medtronic rep to see if he can help you out. We used to have the most awesome Medtronic rep who gave us boxes of samples, etc.

    We have a Medtronic pump and started with the Medtronic CGM but switched to Dexcom G4 when it came out. We have no interest in going back for many reasons. If you want me to detail them out, I will.
     
    Last edited: May 17, 2014
  3. Shopgirl2091

    Shopgirl2091 Approved members

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    I agree with MomofSweetOne - get a new endo - it may be a pain to drive further, but it will go a long way to relieve the troubles you are having. It obviously sounds like your endo is not listening to you, and you need someone who is going to work with you and not against you.

    When we started pumping I mentioned to the doctor that we were having trouble getting sites to last longer than two days - some because they just didn't stick that long, and some because of my son's body chemistry and the insulin just stopped infusing well. We had our prescription changed to every two days. A reasonable doctor should have no trouble making those kinds of changes to prescriptions for you.

    Find someone who will listen to you, support you and be on your side.

    I'm sorry you have had to deal with that frustrating situation, diabetes is hard enough without people being difficult. I hope you can find someone who works for you.
     
  4. mamattorney

    mamattorney Approved members

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    I agree with the others - find another doctor.

    Insurance only covers 10 sets because that is what the doctor prescribed. He can easily write a new prescription for a change every two days. Our current prescription is for a change every 1 to 3 days because we were losing sites at an alarming rate in the beginning while I figured out what extra adhesives would work for my daughter. I panicked and asked for a new prescription and that's what they wrote it for, so I can order up to 9 boxes every three months.

    He sounds like a piece of work!
     
  5. kiwiliz

    kiwiliz Approved members

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    If you speak to your Medtronic rep and explain you might have to stop pumping because of a shortage of sets - I am sure they will come up with a few extra. They will not want to lose you as a customer. Sorry you have such and awful endo. I agree with the previous posters - it's a relationship that should be two way. It would be sensible to change to one who doesn't have a "God complex". (I think that's the phrase) I hope it goes better for you. I think you will be happier with the pump if you can fix those two issues.
     
  6. rgcainmd

    rgcainmd Approved members

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    Stephanie, I think your endo and our "comprehensive diabetes team" scored 100% on the "How to Treat Patients Like Crap" exam. My advice is to do what we are doing, which is switching to a new endo ASAP.

    It's doctors like this that give doctors like me a bad reputation. If I ever get burned out and treat my patients in a manner similar to your endo, may I have the good judgement to retire!
     
  7. jacks101

    jacks101 Approved members

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    I think your problems are with your doctor, not pumping. I'd find a new doctor immediately, no matter the travel time.
     
  8. shannong

    shannong Approved members

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    I'm with the others - find a new doctor right away.
     
  9. missmakaliasmomma

    missmakaliasmomma Approved members

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    Of course I agree with everyone rose to find a new endo but yo also answer our question about infusion sets, we had issues with the flexible cannulas but after switching to steel, we have not had one issue, so while we may get 10 a month.. I'm nit actually sure how many we get lol, i change her site about every 4 days with no issues whatsoever
     
  10. dpr

    dpr Approved members

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    Like everyone else has agreed, time for a new endo!! It might be worth trying a few other local endos even if they are adult endos. If you find one you like and will work with you it's worth it's weight in gold!

    I'm so sorry you have to go through all this. Diabetes is plenty hard enough without having to deal with jerk doctor.
     
  11. wilf

    wilf Approved members

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    So why not just make the changes you think are necessary?

    Lots of people here who can walk you through decreasing basals and increasing her carb ratio. :cwds:
     
  12. Justme-Stephanie

    Justme-Stephanie Approved members

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    Just an update....I Found a endo 2 1/2 hours way, and she travels closer to our area, 1 hour away every 4-6 weeks. We have to do initial visit at her clinic and she will do follow ups at the closer location...OMG YEAH!!!!! Thats a start, wont be able to see her for a month at least, have to wait to see PCP and get new referral, and pray that insurance will except referral(i guess there has been issues with it being denied since there is a closer endo). As soon as I know we dont have to go back to the crappy one, i will make some basal and carb ratio changes my self, I dont want to piss him off just yet, in case we have to return to him.

    One question...anyone know how I find out who is the medtronics rep is in my area without asking the endo? Someone posted that I might be able to ask for extra supplies from them.
     
  13. dianas

    dianas Approved members

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    It might say on your Medtronic account. Or call the 800# and ask who your current local sales and clinical reps and their contact information. Everyone should have access to that information. They should be able to tell you. If you have prescription on file they might be able to mail out samples of different infusion sets to try / have on hand also from the main office.

    Although I don't know why your endo would be upset if you asked them for contact info for Medtronic. You're a customer too and part of their job is supporting patients in the territory they work.
     
  14. dmb0928

    dmb0928 New Member

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    Agreeing with the rest...find a new doc. The words "you're testing too much" should NEVER come out of your doctor's mouth. I've also had problems with jerk endo's (maybe it's a thing?) and currently just see a GP, but one who is great and listens. I may try for another endo when I move to Chicago and see if I have better luck. Your doctor should be bending over backwards to make sure you have a prescription that covers what you need with a bit of a buffer. I also keep a couple infusion sets at my desk at work and a couple other places. There's no way that a doctor shouldn't prescibe enough so that you have at least an extra 4 or 5 laying around for emergencies.

    As for the food highs...insurance recently forced me to switch from Humalog to Novolog, which was a bit of a transition. I noticed I was having horrible food spikes that would not come down after no matter how much I bolused before or after. But sugars were fine before eating, so figured, can't be my basal, right? I actually ended up increasing my basal more (only daytime), and that leveled out the food spikes I was having, and I'm not having huge drops in between either. So you may need to tweak a couple things, but it would help if you had a doc you could actually talk to.
     

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