How closely does your doctor work with you to tweak pump settings? Are you happy with the help you g

Our doctor was asking us to upload once a month. He is a very nice guy, but given the amount of effort we put into managing Matt's diabetes, I never felt his A1C mirrored our efforts. He always hovers around 8, usually slightly below. Considering he tests very frequently and I wake up several times each night to test, I always hope for better.

One red flag for us was that Matt rarely had a night where I didn't have to give a correction or give carbs at some point in the night. This was the case even after he had his pump settings tweaked by the doctor. The other red flag was that the doctor never once asked us to do basal testing. He said he could figure things out simply by looking at the data from the pump.

With that said, we just hired an outside consultant to manage things for him. So far, we are very happy. Although basal testing is a real drag for a kid, we had 2 nights in a row where his numbers were relatively steady through the night and I didn't have to make a correction or give him carbs.

This whole experience is making me wonder....Are you happy with the service you get from your doctor? Does he or she do basal testing with you, and do you feel like you get feedback in a timely manner? I'm glad we found an independent consultant, since even though it costs money out of pocket, I like that I can do all of this testing in a timely manner and communicate with the person daily throughout the process. I feel like we are making some excellent progress. I am going to continue to go to the doctor for checkups, but if we continue to be happy with the consultant, I am sticking with him for the long haul.

 

I don't think we've ever had a dr/ nurse mention basal testing. I only learned about it online. We don't get much help from them at this point but I don't ask either. I am usually annoyed by the suggestions they give at out quarterly appointments though occasionally they are helpful. IMO though I know teen years can be tough they should be working with you to lower an A1c of 8 if that is what you want.

 

We actually communicate with the diabetes educators first, and if I feel like it is not helping, I will email her endo directly. Our DEs are fantastic and are quick to respond and very helpful. We were just emailing back and forth this week troubleshooting issues with evening and nighttime blood sugars.

I am curious, is your endo through a research hospital or a general practice? I have a feeling that makes quite a difference.

 

While I believe that my daughter's endo and her CDE are both doing a very good job, I don't think they know a whole lot about what it takes to accomplish tight BG control with a pump. I think it's easy for us (parents on this Forum) to forget that the majority of parents of children with T1D are fine with letting their kids' BGs meander anywhere between 70 and 180 and don't get too worked up unless their kids are in or above the 200s for extended periods of time. I truly believe that we are in the minority, at least in our endo's practice, because I keep getting comments about not needing to keep my daughter's numbers so well-controlled and because I received essentially no help from them after pump start when she was almost always over 250 for the first three weeks. (Sure, they wanted me to send them a copy of her pump chart daily, but they kept telling me not to make any adjustments despite seeing that my daughter was having average daily BGs in the 260s!) As I've posted elsewhere, at that point I gave up asking for their input and assistance and turned to the books Think Like a Pancreas and Pumping Insulin and to the other parents on this Forum. If it's anything other than tight control or pump settings, we get timely feedback. I'm not saying everyone's endo is like this, but my impression is that ours is juggling a lot of patients, some of whom are newly diagnosed, and she doesn't have the time (or the knowledge when it comes to achieving tight control via pumping) to assist us with pumping. I'm just happy that the two books I mentioned exist and that this Forum exists. And I won't hesitate to consult with the expert CDEs at Integrated Diabetes Services (Gary Scheiner's people) if my daughter's numbers get exceptionally wonky during puberty.

 

Our dr asks us what are the current settings. And how dr orders should be written.

With that said, I do go to them every once and a while and say, hey I am not sure where I am off, can you look over and give suggestions and reasons??? This works for me as I tend to be conservative in setting changes and do prefer to be more heavy handed in basal when using Apidra.

I f I asked for weekly help I think I could depend on them for that, but that would not go on forever.

 

T1D is only 10% of my Endo's practice. ( my kids endo practice0

 

I can't remember the last time we got pump setting advice from our endo. Years and years. At this point, I would just be annoyed if they offered unsolicited advice in that area.

 

We discuss changes if needed at our 3 month appointments. But, they always preface it with "how do you feel about?" They let us call the shots. It is nice to toss ideas off another person though.