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When do you make the leap from ped endo to adult endo?

Discussion in 'Parents of Teens' started by Kaylas mom, Jun 27, 2014.

  1. Kaylas mom

    Kaylas mom Approved members

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    My dd is 18, will be going to college, has a job. Our ped endo comes to town locally once a year and we see his PA the other three times and the times are so limited, Tues morning or wed afternoons once a month. I asked for a referral to a local adult endo that I have heard great things from. They seem sorta hurt? Like.. we were told, you know she is due for her yearly labs in Sept? and She is due for a new pump in Nov..

    Won't the new endo do all that too? It is a huge jump through the hoops to even get into this adult endo. I can't call, everything has to be faxed from the ped endo's office requesting an appt. Well, they do that once a week and it can take months to get on the books at the new endo so we ended up making another appt with the ped endo.

    I just wondered if it was like this for everyone?
     
  2. KatieSue

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    We're in the midst of this now. Mine is also 18 and starting college in the fall, although she's staying home and could stay with her current endo. We want to change because our current endo we don't get much out of. Not that I expect a lot but it's basically always "great job I wish all my patients were like you" and that's it. Her A1C are okay but could be better with some effort.

    Anywho at her last appointment she asked about switching and they told her to find a new one and then let them know and they'd send over her records. I wasn't there as she's decided she's 18 and she's going to do the appointments herself. I did a bit of research then she was talking to a gal at her work who just started with an adult endo as well whom she liked so we've made an appointment with him. It's not till August. Luckily we don't need any new prescriptions in the meantime.

    We are luckier in that we live in a larger metropolitan area so there are more adult and peds endos to work with.

    Sounds like you have a good plan. Go to the ped Endo for this appointment until you can get into the adult one.
     
  3. wilf

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    Here you can't see a ped endo after you turn 18 - and they refer you to an adult one.. :cwds:
     
  4. nanhsot

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    We went round and round about this. And around some more. The pedi endo can see until age 23 here, but college is 4 hours away and we couldn't make the appointments sync with his schedule. He went one final time after pump change (July) and then went to school. His college town has a large medical center with a big diabetes program, so he went there. Bad experience, no follow up, no input, no way to renew prescriptions, no phone number or email to call, seriously it was neglectful medical care at best. Luckily I had renewed all his prescriptions at the july appt but it still took me about 3 weeks to get someone to answer the phone (it would ring and ring) when I needed an update to his insulin. His insulin! He went in October of 2013 and hasn't been back.

    I tried to get him back with his pedi MD when things went sour (he tried to reschedule an appt in April because of an exam but they just...cancelled...no follow up despite my formal complaint to CS), but they said once you make the switch you can't come back.

    At that point I was seriously upset at the whole system. Happily he went to summer session at a different campus and I found a GREAT MD clinic that doesn't mind skyping for at least some of his appts. He went in June and really likes them, I already needed an Rx update and found them very easy to work with, quick response and very nice. He is 19 now so he manages all his appts but at this point I still manage the meds, it's just easier for me since it involves a lot of paperwork, hassle and time sometimes. And money of course! They told me I could talk with them as long as I didn't become crazy college mom, lol. So far so good.

    So, long story short, do your research and find a GOOD adult endo. Too many deal with T2 and don't really get T1 and aren't aggressive enough. Find one that is easy to talk to, you have easy and quick access to for prescription renewals and all that. For us the transition was not successful initially, and I wish I had done more research into the percentage of T1 the office treats.
     
  5. Kaylas mom

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    Thanks for sharing your experience Nancy, That is my huge fear. I have a T1 coworker that goes to the adult endo we requested so hopefully it will be a good match.

    How does your son like the Tslim?
     
  6. nanhsot

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    He's very happy with the tslim, cartridge size was the driving factor in it but he does like the simplicity of the touch screen and the sleekness of it (shoves it in his pocket most of the time). CS has been VERY good. No complaints and lots of kudos to tslim.

    Did you ask the coworker how easy access is to the MD? That's my main need at this point, I want him to be able to get Rx, or input, or whatever easily. I personally have found that many adult T1s, particularly older ones who were diagnosed young, are very stable in their equipment and prescriptions and many actually don't know about new technology. I think this generation will be different, so I'd want a doctor who kept up with technology changes. Is the T1 you know on pump for example? I'd want a adult endo who dealt with pumps. My son's new endo is himself T1 as is his wife (his nurse). As I said, I was very impressed with how rapid their response was when I needed that Dexcom Rx, and it was simple. That's priority for me personally, easy to access and easy to talk to (whether email, text or phone). I am trying to slowly hand over management of the meds to him (he's already totally in charge of everything related to daily care, I am hands off completely, have never touched the pump or done site changes). At the old endo there's no way he could have taken over, it was hard for me (and I'm tenacious)...with this one I think it'll be easy.
     
  7. caspi

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    This is my concern as well (although I have 3 more years before I have to deal with this). My advice to you, since you are looking at a possible pump change later in the year, would be to stick it out with your current endo until all that is complete and then make the change. I know our current endo is fantastic about prescriptions, pump/dexcom ordering, etc. We just switched mail order companies and it was seamless - the company faxed the endo and they sent over what they needed. I sometimes wonder what it's going to be like in the future when we have to switch. Hopefully there will be some more progressive endos here locally as right now we have some pretty antiquated practices. :(

    Good luck to you! :)
     
  8. rgcainmd

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    Even though I have a few more years (which I hope go by very slowly) before I face this particular decision, I wanted to add that Christina has brought up an excellent point in general (refer to the part of her post that I've bolded). What I am about to say has nothing to do with switching from a pediatric endo to an adult endo. But our experience can still serve to illustrate the possible value in the OP sticking with her current endo for a while longer. As many of you are aware if you've read my long and likely over-detailed posts, my daughter and I have a love-hate relationship with my daughter's endo (and her comprehensive diabetes treatment team.) We recently began pumping about 4-1/2 months post-dx (which is much earlier than some but clearly not early enough for my liking because I, like most parents, want what we believe is best for our CWD as soon as is humanly possible). Even though I thoroughly researched other pediatric endos in our area and had actually chosen one and made an initial appointment (that coincidentally was to have been on the same day as our previously scheduled pump start with our current CDE), we went ahead with the pump start and subsequent follow up with our current endo because, not only would we have had to start over almost at square one with the new endo and have our pump start delayed even further, our old endo at least knew my daughter's T1D history and I had a reasonably good idea about her practice style. (I know, I've made a fairly obvious point here.) All I'm trying to say is that I agree with Christina's advice to stick with a "known quantity/quality" while there is some benefit to be gained from doing so. I know that the OP's situation and mine and very different: I don't need to find a new endo because my CWD is moving out of the area or because she is transitioning to adulthood. But Christina's advice is good regardless. And I also wish you and your son the best of luck, nanhsot.
     
    Last edited: Jun 28, 2014
  9. Kaylas mom

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    Thank you for making me think about these points. My coworker does have a pump, an older minimed.. which she says she will use until it dies. I haven't asked her about accessibility of the endo though. I have a friend with T2 that sees this endo and LOVES her. She is fairly new to our town.. like the last 5 years or so. I have watched her go from a stripmall dr's office to now being inside one of the hospitals. You used to be able to call and request an appt and now everything is automated and you have to be an established patient to talk to a person. Plus you have to be referred even if your insurance doesn't require referrals. I tried to get in with her a year ago and my reg doc wouldn't sign off on it when I wanted to feel her out by becoming a patient of hers with my Graves disease issues.

    Thanks for helping me think it all through. All of you, I just forgot to multi quote.
     

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