I am wondering how each of you manages interactions with your CDEs and MDs. Now that I have all this data from my cgm, I have gone back to revise my basal rates and insulin to carb factors and correction factors. I am finding that this is easier with a cgm and I like that part, but I don’t know how to get this information to the cdes easily so that they can give me timely feedback. I am certain that I need some outside advice. I can’t keep going into the office to discuss each change as I tweek my rates. Do you have any suggestions for anyone in the chicagoland area who does this all remotely so that I don’t have to keep going to their office to get help. Also, does anyone know of any cdes who are themselves diabetics and consequently get how difficult all this is? Thanks for your help!
Deborah,
Gary Schreiner at Integrated diabetes offers this service. I have no clue how much it is or anything.
Wendy
I checked his services out because I’ve heard from experience that it’s a great group. The problem is that insurance won’t cover anything remote. In addition, he’s out of state and not in network for my insurance group. It turns out that I would have to pay an enormous amount out of pocket. I am hoping to find a group in the Chicagoland area that will let me meet with them initially on site and then do everything else remotely so that I don’t have to keep fitting them into my schedule. Does anyone else have this problem?
Deb, any Endo office which wants to do quality care wil go to the trouble of getting the cable and the physician’s version of the “Data Manager” software. (It’s got a few more features than the version which Dexcom sends to us end users.) IIRC, Dexcom charges zero to provide this.
So, with Dexcom, it’s way easier to give really great bG records than it ever was before. Just plug your monitor into their computer, wait 5 minutes, and it’s all done. There’s much better pattern recognition and data analysis too, already built right into Dexcom’s computer program.
I don’t know Chicago (at least, not in the 30+ years). If I was currently Doctor-shopping, I’d be inclined to go to one of the research-oriented institutions. (Northwestern on the North Side, University of Chicago on the South side. A long time ago, I graduated from U of C.) I never interact with CDE’s; just Physicians and APNs. And per above, Gary’s Schreiner’s Book suggests really great tactics for setting basal rates and correction factors.
If your current office keeps insisting that you MUST drag your butt down to their location, in person, for every single adjustment, I say hmmm. Maybe they’re more into the creation of billable office visits (for the money), and less about assisting to you manage it all yourself. Your medical Pro’s can prescribe, advise, review, and discuss; but I think that the only person who can control your Case is you. If your people wanted me to act as their PERMANENT dependent, I’d not be pleased. I’d like to say, take charge! (But I’m not a medical professional, and can’t give medical advice.) If you were to change some settings and adjustment formulas, you’d possibly want to use only SMALL steps, and let those changes “soak in” for a couple of days before making another small change.
NorthShore University HealthSystem, used to be Evanston Northwestern, has a system where you can e-mail your Docs. I see Dr. William Kerr once every 3 months, but use their system to discuss changes, get questions answered…etc. Works great. I have allways gotten an answer to my e-mails in less than 8 hours. You might want to check them out.
Unfortunately, DN is at an age where the adjustments are almost every two days. Constantly tweaking. Figure out the overnight numbers by 1:30 a.m. each night (pattern remains the same usually; just basals fluctuate). Numbers fluctuate, but a lot less from 1:30 to 7:00 a.m. And checks until 3am assures us we can modify correctly. We had used Gary Schiener twice when we were having grave difficulties and he was fantastic. I cannot recommend him highly enough. Firstly, I would find an endo’s office that has Type 1 CDEs if possible. A lot of them do. Secondly, it is a lot less expensive to consult with Gary only when you need to, as opposed to buying the yearly plan. Even if you can fax him your numbers, say, three times a year, or buy one of the less expensive plans, it may be worth it. You can call him when needed; you don’t have to have him on yearly retainer.
Hi Deborah:
I’m in Bloomingdale 
Do you know or have you made contact with Carol Vagnoni - a Trainer from Dexcom. She was incredibly helpful to me when I got my Dexcom. Her number is 630.347.7546.
Patti
Deborah,
I’d suggest calling Carol Vagnoni, above,as a resource to who among the physicians in the area who prescribe Dexcom might be well connected via email & computer if you really want to go that way… I’m in the chicago area. Haven’t found anyone yet.
I second the person who said to learn to set basals and boluses yourself.
Walsh’s book Using Insulin has a good explanation. Read it thoroughly. Take it step by step. Dealing with small numbers helps if you’re a bit on the fearing side. But – Go for it! Once your docs and CDEs know you understand the process and its precautions, they’ll be happy to hear your new doses when you go back and you’ll decide you don’t need that tether - or expense…