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Starting to think about pumping - how long does it take?

Discussion in 'Parents of Children with Type 1' started by jenm999, Jun 25, 2014.

  1. jenm999

    jenm999 Approved members

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    Hi all,

    3 months post diagnosis. We've gotten the Dexcom and LOVE IT. Now thinking about a pump. I called the rep at Animas only because a friend has the Ping and loves it, and there's the Dexcom-compatible Vibe in Europe which should get approved here soon (har har). She did the insurance inquiry for me and there's no six month wait or anything - we've got coverage now. They even called back and said we could get started immediately.

    Just checked in with our CDE who says getting on the pump is a 6-9 MONTH PROCESS. Um, what?

    We are signed up for our hospital's July pump class (Boston Children's) and our son is going to diabetes camp the week after. So I thought that end of July and all of August would be ample time for the various meetings with endo, nutritionist, saline start, all that jazz. Am I being naive?

    My reasons for wanting to go on the pump are all the usual reasons, but also that my son is still honeymooning big time and only takes 1/2 unit of Lantus, but he still goes low during the night. So a pump would allow us to suspend the basal at night, or tweak the doses, etc. And his Humalog needs are also modest - even if we adjust his carb ratios the doses are the same with rounding (we are using the 1/2 unit Humalog pen).

    Our CDE is going on maternity leave for three months beginning in early August, I may just move forward without apology. But really, am I missing something here? Is there any reason why two competent adults with post-graduate degrees, flying colors on MDI, and 100% insurance coverage should not be fast-tracking this???

    Thanks for your advice and input!
     
  2. Lori_Gaines

    Lori_Gaines Approved members

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    Make it happen! My daughter was on a pump 4 1/2 months post dx, and it was a pretty quick process. Our endo warned us that pumping initially feels like dx all over again and that we would want to chuck that thing against a wall. She was right. BUT, I am so glad we stuck it out. Love it. Really love that you can suspend basal for lows, like you referenced above. Go go go!!!!! :D
     
  3. Don

    Don Approved members

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    " I may just move forward without apology"

    I encourage you to move forward with all bells on! A disease managed 24/7 requires a judicious skepticism toward the opinions of medical professionals. Diabetes forums are full of examples of inapplicable or flat out wrong judgments made by "experts."
     
  4. rgcainmd

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    Definitely some similarities between your family and ours:

    We acquired and began effectively using a Dexcom a little over three months past dx. Our insurance actually approved coverage for a pump less than two weeks after my daughter's diagnosis. My daughter is also still honeymooning (although she was using a higher dose of Lantus than your son prior to her pump start, but that only make sense in light of the fact that your son is 6 years old and my daughter is almost 12 years old and one would assume much larger than your son). We also had "flying colors" on MDI (A1C of 5.8, due in part I'm sure to the fact that my daughter's pancreas was still spitting out some insulin). Instead of two competent adults with post-graduate degrees, my daughter's parents consist of an unemployed lazy person with a bachelor's degree (my husband) and a mom who has had the initials "M" and "D" after her name since 1992 (and I will still be paying off the loans for that education long after I die...) One would think that in both our cases waiting longer to begin pumping would be pointless. But NO, I had to beg, plead, send multiple simpering emails, and make numerous subservient phone calls to my daughter's endo in order to have my daughter start pumping 4.4 months after her diagnosis. And I was made to feel as if I owed our "team" my undying gratitude for this privilege. Bottom line, once your insurance approves coverage, it's all up to your endo. Some endos (like ours) just seem to have this "magical" 6-month mark floating in front of their eyes and/or were given electric shocks whenever they allowed a patient to move ahead with pumping earlier than 6 months post-dx. Other endos are more flexible and decide on a case-by-case basis. I hope yours is one of the latter.

    Side note: I have to agree with Lori that pumping was extremely frustrating initially. For us this was mainly because our endo recommended doses/parameters that were so far off the mark at pump start and was willing to make the teensiest of teeny-tiny changes only after the first two weeks. I finally just put my trust in Pumping with Insulin and a handful of tweaks later, my daughter's numbers are once again at least as good as they were prior to her pump start (and those numbers were solidly acceptable, if I do say so myself). We still have a bit of a ways to go until we tighten the reigns enough for my liking regarding BG control, but we are now traveling along that path at a reasonable pace. (At least until puberty strikes!)
     
    Last edited: Jun 25, 2014
  5. jenm999

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    It's funny, our endo is extremely supportive! For example, I mentioned having read on this forum that it can be handy to have Zofran on hand for sick days. She said something along the lines of, Zofran can mask DKA if used indiscriminately, so we prefer parents not to give it without consulting an endo, but as long as you promise to do that I'm happy to give you a scrip. When the Animas rep called to tell me we were ready to go, he even said he had received sign-off from her office. It's the CDE who is being the gatekeeper here. I'm just confused about what the essential steps in this process really need to be.
     
  6. rgcainmd

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    We did end up waiting a couple of weeks after our endo approved us for a pump before our CDE (who I refer to as "Pump Lady" or "PL" for short) contacted us to make a "Pre-Pump Appointment." Said appointment was painfully l-o-n-g because I had already researched up-the-wazoo the differences between the various pumps available to those of us living in the USA, and had read every single post on this Forum regarding the advantages and disadvantages of the different pumps. Our minds were pretty much already made up, and nothing PL had to say made us waver in our decision. Another 34 days later (even though my daughter's pump was in the hot little hands of our local OmniPod rep one week after our Pre-Pump Appointment) my daughter began the dreaded (and IMHO unnecessary) Saline Start, which I begrudgingly agreed to because it lasted not one minute longer than 2 days. (What could I have possibly learned during those 2 useless days that would prevent me from accidentally overdosing my precious daughter with insulin or allowing her to plunge into the deepest of deep DKAs? After having worn a demo Pod for three days many weeks prior to the saline start, my daughter already knew that the Pod's adhesive played well with her skin, the Pod was not intolerably large or intrusive, and she actually found it pretty cool after practically everyone in her school asked her about the piece of wonderful technology seemingly from the far-away future that was attached to her arm.)

    I've found the ongoing dance between our Pump Lady and endo to be a strange one indeed. The endo has to approve the pump and write the actual medical order but you can't go ahead with pump start until the pump lady says so. Our PL outlined what to me looked like some pretty solid basal rates, I:C ratios, ISF, target BGs, etc. but couldn't instruct me to use these parameters until our endo tweaked them almost beyond recognition and gave them her official stamp of approval. Then our endo turned around a week later and said that our PL knew this stuff way better than she did. But then she once again "made a few little adjustments" to the changes recommended by our Pump Lady which made my daughter's BGs even worse. Whatever...I just don't understand the dynamic between our endo and our Pump Lady, and I suppose I never will.
     
    Last edited: Jun 25, 2014
  7. jenm999

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    Oh, this is ringing a bell! Are you the one who wrote the pump dissertation?! So annoying and condescending.

    Our CDE goes on maternity leave sometime in early August through November. Maybe we'll get someone more compatible during that window. I am not working in August and would love to give it my full attention. She said it might be easier to start during school and I call BS on that one!! She has T1 herself, interestingly.
     
  8. Mommy For Life

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    6 to 9 months??? Seriously? DD was pumping in less than 30 days when we made the move to pump. We had to complete 2 weeks of logging. We also met with the nutritionist, CDE, took a 1 1/2 hour class with the rep on the pump and the various insets. Then, when the pump arrived, we went back to Kaiser to meet our rep and start pumping. I really don't get the saline start. Maybe it helps some, but from what I have read, saline stings.
     
  9. mmgirls

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    8 years ago when I had a newly DXed 13month old not honeymooning I was able to get her on a pump right at our insurance 6 month waiting time.

    You are newly DX with a DEXCOM, you are miles ahead of the game!

    The issue comes to play that even if Animas has checked for coverage, they have to receive a RX form your endo. I would simply tell the endo that you believe that this is the best them for your family to start pumping. Your child will be going to camp and be returning with great thoughts about pumping and there is no better time than now. You are ready for this! That you believe that the pump is the best choice to help avoid lows with Dexcom going and give you the ability to make changes on the daily for an young active child.

    I can not imagine an endo that wrote an RX for the Dexcom would hold a family back from starting pumping, especially if you are already signed up for the pumping class.

    At the worst your endo my=ight state that the pump be delivered to their office instead of your home to make sure you do not just hook your kiddo up. ( its been this way with all my pumps till last year)

    If you want to pump, advocate for your child and family that it happens as quickly as possible.
     
  10. mmgirls

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    Hey sorry, my first reply was from your first post.

    Your CDE might want to be the "pump trainer" for your startup. It is usually a contracted position with Animas in which she may receive compensation. Your CDE may actally not really know how fast it can happen when a parent wants it.

    I would proceed and rave about how happy you are to be pumping later.
     
  11. mmgirls

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    ok just one more comment.

    SO, I happen to have a second dd just dx in March thru Trial Net at Stanford CA. I took her for her first endo apt in May and her A1C had gone from 5.8 to 6.8 in March to May and once I saw her first 300 after that appointment I got the blessing to put her sisters old pump on her.

    It is al about how much a parent really knows, what their perspective is, what their knowledge level is. KWIM

    You are here on this site and your know way more than I did within my first 4years with T1D.

    Get the book pumping insulin and read it, get the concepts of insulin duration and how changes in basal and bolus can look.

    become your child's 'expert".
     
  12. rgcainmd

    rgcainmd Approved members

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    Yep, I'm the obsequious schmuck who wrote the pump dissertation at the urging of my daughter's endo, only to have the Pump Lady tell me that she didn't need or want to see it after I proudly presented it to her the next morning. Live and learn, etc.

    It would be a shame if your son was not allowed to start pumping by August when you are not working and able to give this rewarding endeavor your full attention. Easier to start once school is in session?!?!? For the life of me, I can't figure out the logic behind that statement. Then again, I'm not a CDE and I do not know everything (even though I often try to convince my daughter that I do!)
     
  13. rgcainmd

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    Agree with mmgirls 100%. Thanks to Pumping Insulin and my amazing ability to read the written word, my daughter's BGs are no longer sloshing through the high-200s through mid-300s!
     
  14. jenm999

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    I already bought Pumping Insulin!! I am so ready for this. I'm just going to cheerfully move forward, her chagrin be damned. Most of it will happen while she's out on mat leave anyway. Thank you all for the encouragement!
     
  15. rgcainmd

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    I felt the same way, and refused to let anything or anyone get in my way (although I did whine about the process quite a little bit on this Forum!) I haven't for an instant regretted the huge hassle I went through in order to get my daughter "fast-tracked". You go, girl!!!
     
  16. mmgirls

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    You walk in there ready then!

    I actually firmly believe in "emails", you can compose them without concern to what the response maybe . You can take your stance and give your reasoning without interruption.

    Your endo has to 'reactic" to what you had to say in a formal and coherent way. And if they do not then the more power to you!
     
  17. StacyMM

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    I think that some practices make the process longer. For us, we picked a pump (talked to the reps) then told the doctor at our next appointment. There are practices I've read about here that seem to make patients attend group meetings or demos and then start the conversation and some require more meetings, saline starts, multiple pump classes, etc. If you are in a practice like that, I could see the process being several months long.

    I'm a big believer in empowered patients - do your research, figure out how the office can support you in caring for your child, then explain what you need them to do. Some parents get huge pushback, others don't...but it never hurts to try :)

    And, if you know what you want and just need the approval, keep working on it. Have the reps reach out to the doctor, talk to your insurance company, talk to the endo directly...do everything you can. I've read about people waiting 6 months or a year just because of office policy and I'm sure they've fought for earlier...sometimes you can make a change and sometimes you can't. And changing practices isn't practical for everyone so sometimes waiting it out is the only option people have :(

    In our son's case, he was diagnosed just before New Year's and was pumping by mid-March...but we already had a T1 at home had been doing the pancreas thing for 6 years, so I'm sure that helped. For my daughter, we didn't pursue a pump for years so I'm not sure what the response would have been.

    And, starting in the summer would be SO MUCH EASIER than starting during school!! That just seems crazy!!
     
  18. mwstock

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    We decided to go on the pump after three years of multiple daily injections (MDI). We too were anxious to get our son on the pump, but the process was drawn out. I would not rush or force the process, but would in turn use the time to study about the pump, basal and bolus and corrections. You will need your CDE and team during pump start to assist with the initial sertings and making adjustments. There is a lot to learn and it is very much trial and error when going on the pump. It is important to learn when adjustments need to be made and what needs adjusted. Each family is different and some families are more comfortable with the pump and technology. The pump and CGM are great tools to help with the day-to-day. They are only as good as the person or people behind them. If you do well with MDI, you most likely will do well with the pump.
     
  19. nanhsot

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    Our insurance company dictated a 6 month wait. There were some hoops to jump through to "prove" his T1 which were kind of ridiculous, but we jumped them. So for us there was some slogging through to do.

    Once we got the pump, it was a tough road, so realize that because you've been so successful at MDI does not mean pumping is easy. It's not, at least for some. For my son it was horrible and hard and I wanted to run it over with my car many many times. It was a good 3 months before he really settled into it and 6 weeks before his numbers were anywhere near good. It was hard, so be prepared for that.
     
  20. jenm999

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    Back from pump class and fuming. The process as they outline it really takes 6-9 months - and my chances of starting during the summer when I'm not working much are virtually nil because they prioritize the college students who can only start in the summer.

    The DNE running the session intentionally omitted information (she was visibly annoyed when I mentioned the Cut the Cord program to a parent after the session, for instance), did not know about the Animas Vibe (or pretended not to know), called the Medtronic pump the Enlite (which I believe is just the name of their CGM), and there is a mandatory 7 day saline start. Also, all patients are expected to change sites every 2 days instead of 3 - they say this is the best for pediatric patients. She also says that it's easier to start on a pump once the honeymoon is over, is this true?

    I've got a checklist a mile long of classes I need to attend and appointments I need to set up (e.g. a pump discussion session with the DNE, then another session if we decide to move forward, and "advanced carb counting class", another meeting 1:1 with a nutritionist, another follow up with the endo, another meeting with the social worker, and this does not include the actual training on the pump by a company representative).

    I am about ready to switch practices to one that respects my knowledge, and I would in a heartbeat if this weren't the most respected clinic in the area, and one of the best in the country (Boston Children's/Joslin).

    I know these protocols are in place for a reason and not everyone is as Type A as I am, but I really feel this would improve the quality of HIS life.
     

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