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Monday, November 22, 2010

What gives?

I don't get it.

Please, dear D mamas and papas, help me understand.

Today, we visited our endo for our quarterly visit.

For many reasons, I love our endo. I trust his judgment. He's been practicing for 32 years, and he knows his stuff. Though he has all this experience and knowledge, he's not "old school" at all. He's up-to-date and a true technophile. He's a perfectionist. He truly cares. He's wonderful with Jack. He never talks down to us. He listens to our concerns. He responds to my email messages lickety split. I could go on and on, but I'll spare you. Suffice it to say that he's a good match for us.

At today's appointment, I told him that we'd like to consider both a pump and a CGM (continuous glucose monitor). Now, we've had this talk with him before, but because of our insurance situation, we haven't done anything. We have a ridiculously high deductible, so we pay out of pocket for ALL D supplies, medications, doctors' visits, lab work, diagnostic tests, etc. Thus, the only time of year it makes financial sense for us to get a pump and/or CGM is now.

Our endo was all for the CGM. In fact, he submitted the paperwork for us within just a few hours of our appointment (another reason I love him).

But, then he discouraged a pump. "If it ain't broke, don't fix it," he said. That's not the first time I've heard him say that. Every time we've raised the pump topic, he's said that.

What he means is that we've consistently achieved a decent A1C for Jack. Today's came in at 7.2. Woo hoo! :) So, shots are working. We don't necessarily need improvement there.

Though, being the type A perfectionist that I am, I can't help but wonder whether we could improve upon the 7.2 with a pump. 7.0??? 6.8???

He also said that Jack is still on a small amount of insulin. His Lantus dose is 10 units. Doc thinks he should need at least 12 units of Lantus, before considering the pump, to make the conversion to the basal rate nicer.

Now, I've done my research. I know the Animas Ping, for example, can deliver 0.025u of insulin. So what's the big deal if we need to break down 10u of Lantus (and convert it to Humalog) over a 24 hour period???

I don't get it.

I know there are kids, who probably require even less insulin than Jack, who're on pumps. I know there are endos, who actually encourage pumping.

What does your endo encourage? What are your thoughts? What are your child's basal rates, if you don't mind me asking?

I know every child's diabetes is different. I know all docs are different, and I trust our doc's judgment. He's totally into technology, and I know he would push the pump, if he felt it would help us.

If we don't get a pump now, we'll have to wait another year, unless our insurance situation suddenly and miraculously changes. Jack wants a pump. So, now seems like a good time to me...but our beloved doc thinks otherwise.

What gives? Any ideas? Any words of wisdom? What has your endo told you?

16 comments:

Wendy said...

Heidi...

Our endo started advocating the pump before I was willing to listen. Looking back, I think she realized how much **I** needed the flexibility of a pump.

It just seems unreasonable to wait another year only to be told this same thing next year. I completely understand why you'd want to secure a pump NOW...even if he didn't start wearing it right away.

Ugh.

Ultimately, I think Jack is old enough to have his opinion considered. If he wants a pump....the doc should be supportive!

He sounds like a great doctor ... and I agree to a certain extent with the "don't fix it" thought process, but there's a lot to be said for embracing technology as well.

Denise said...

Bryce has been on a pump for a year and a half (5 months after dx), he was only on 1.5 units of Lantus when we went it. Our endo is also type 1 but on shots...he was still very supportive of going on the pump and I really appreciated that. It was the best thing for us for sure.
Going on a pump shouldn't be to gain a better a1c (you're already doing that) but to gain more flexiblilty and less shots.
Your endo should support you..esp since he is not the one managing Jack's D all day every day. If you really want to get a pump, I think you should push for it and get it done.
Best of luck!

Stephanie said...

Hey Heidi!

First, great news on the Dex! We are trialing this week...your rep will probably be Jacqui, who is my neighbor! She's awesome and has T1 herself. :) Let me know if you have any questions - feel free to email me!

I'm sorry that Dr. P was kind of a bummer about the pump. When I talked to Dr. H a few weeks ago, he basically told me he had no problem with Adam on a pump, and to just go ahead and order one! I chose to wait and for us to have a visit with the CDE at the hospital first, but we will likely be ordering one in Dec. I am just so ready for the flexibility of the pump - at first I didn't think it would make much of a difference, but I am seeing how it will make certain things SO much easier.

Like today, when I forgot to count the carbs for his chocolate milk...and had to give him another shot 1/2 an hour after his lunch one. Sigh. Good luck. And if you want to chat, shoot me an email!

Stephanie said...

Oh, and Adam is only on 3 units of Levemir right now...to answer your question. :)

Stephanie said...

OMG, I'm posting AGAIN! Night Owl alert!

How cool that you used to be a copywriter too! We are like long-lost twinners. :) Talk about having a lot in common!

Alexis of Justices Misbehaving Pancreas said...

awesome job on the A1C first of all! J was on a boat load of lantus and humalog and always achieved A1Cs in lows 7s only twice did we see an 8 so for us the pump wasnt about better A1Cs but less lows! Lantus scared us. You couldnt turn it down like you can basal. It just made a big difference. We have reduced lows but i say 70 percent. And its made eating fun again! I know kids who are on 10 units of basal and bolus total for the day on pings. It should be jack and your choice. I hope you get what you want. Either way youre doing awesome !

stock trading said...

Your endo should support you..esp since he is not the one managing Jack's D all day every day.

Tracy (The Crazy Pancreas) said...

Pumping along with Dexie were 2 of the best things we could have done for The Superhero.

If YOU and Jack are ready, I would push for the pump. Why not try to reduce the amount of pokes he gets? If he is ready?

The Superhero was on about 2.5 units of lantus before pumping. Our rates change throughout the day now (which is awesome!) He has LOW basal needs at night and much higher ones during the day.

Here are his current settings, if it helps:
12am: 0.050 units
2am: 0.125 units
6:30am: 0.325 units
10am: 0.300 units
12pm: 0.350 units
2pm: 0.325 units
4pm: 0.300 units
6pm: 0.175 units

You could even ask him to let you GET the pump now and start it sometime next year. That way you will have the pump in hand and can start the training in a few months if you wanted to.

Reyna said...

Joe was 3 when he went on the pump Heidi and his total daily dose of insulin was about 8units a day for EVERYTHING...coverage of carbs, basal, and correction. I don't think for that reason alone you should be discouraged from pumping at all.

Your endo sounds fabulous.

I say go with what you, Gregg, and Jack choose. Only you know what is right for you. I don't know if you will get better A1Cs b/c girl you guys rocked that! Congrats. The flexibility in Jack's life and your life will be what you notice the most I think if/when you start pumping.

Amy said...

I can't comment on the pump, as Ellie is too early in her diabetes to get one. BUT, it does sound like your endo, as fabulous as he is, needs to be reminded it is JACK's diabetes (and yours ..... being teh Dmom and all) so you guys need to decide what will work best for your family. Financially and emotionally and physically.

Just my 2 cents. ;)

Beverly said...

Heidi-- You can also let him know that it is not just you and J... Any other caregiver, ie: grandparent, would really be better equipped to help.... thus helping your sanity!! And even your endo should care about your sanity... right?
((HUGS))
NaNa Bev :)

Liz said...

Penny's on 6.5 units of Lantus a day, but I think she's taking more Humalog for her meals than Jack is (she's on a sliding scale of ratios, starting at 1:12 for breakfast and inching up to 1:30 for dinner). But a 7.2 is fantastic! We've been hovering around 8 for most of the last year. (Though that's what our endo has told us to shoot for, for now, because Penny has trouble feeling a low coming on and tighter control just ups the risk of lows.)

Anyway, our endo (whom I quite like) hasn't been pushing the pump or CGM -- he told us that if we wanted to go that route, he'd back it, but that we absolutely positively shouldn't go there unless Penny wanted to. (He's had several kids who were pressured into it by their parents, and they rebel by just unhooking the pump when they leave for school in the morning, which is, of course, disastrous for their blood sugars.) So far, Penny's not convinced that the benefits are big enough to risk the admittedly larger and slightly scary-looking infusion-insertion needle. But we keep talking it up -- we figure she'll come around when she realizes just how much more freedom it will give her.

Rachael said...

Congrats on the super awesome A1c. My doc suggested a pump about 3 years ago. I had been diabetic for almost 8 years before then. I didn't even know it was an option. I have to laugh because he had NO idea what a CGMS was or how it worked. I think that even the best docs have "prejudices" and preconceived ideas about things. They form opinions the same way we do.

As an TOTAL outsider, I would write up some "case studies" of some of the other D Moms and present it that way. Sometimes, docs just need to see it in a different light.

If he doesn't want you guys to start a pump now, can he get the Dexcom for you and order the pump and just "hold it" until you are ready? That way the insurance would cover it? Two more units of insulin won't be too far off! Take care and good luck. Thanks for your super sweet e-mail! I am glad you liked the prizes! Happy Thanksgiving!

Lisa said...

Hi Heidi!

We started my daughter (4) on the pump this past June and JUST started on the CGM last Friday. I have to tell you that one of the main reasons that we got the pump was because she was on such small doses of insulin and it is difficult to get an accurate amount with a syringe. I believe we were maybe up to 3-3.5 units of lantus before our pump start and I believe now we average 10-15 units of insulin ALL day. We actually brought up the pump at diagnosis and they just said "when you are ready"; well, we were ready within about 6 months :). Our endo completely supported us; in fact, she said she puts a lot of her littlest patients on the pump because of the ease it gives for dosing smaller amounts of insulin. She recommended the Ping because it can give the smallest increments I believe.

I would go back to your endo and advocate for the pump again. Ultimately, as parents, I think we should have the final say in those decisions and decide what is right for our kids and family. It sounds like you have a great doctor and if you just push a little, he would probably give in. Our endo was hesitant about getting E started on a CGM at first just because of her size and lack of "real estate" for those precious sites. But after bringing it up a couple times and pushing just a little, she gave in.

Good luck and Happy Turkey Day!! And thanks for initiating the D Mama welcome wagon for me on fb!!

Laura said...

If you are ready to pump you should press the issue. Even if he doesn't think you are ready - it is a good time to get the pump rt pumping due to your deductible. You don't have to start pumping tight away. Your child - your choice!

BTW - Nate started pumping 6-months after dx - he 20-months and wasn't even on Lantus yet.

Also, Nate's a1c dropped a point after we started the pump. Jack's is already awesome but hey - like you said - it could go down.

Whatever you choose - we support you 100%!!

April Ann said...

Heidi

T was diagnosed in Feb of 2010. We started pumping in June. He was on 8 units of Lantus when we started pumping with the Medtronic Revel with the integrated CGM. We love the flexability. T's basal is .03 and .0325 units per hour.

Since pumping we have had a 95% reduction in lows. He seldom goes low.

I am glad you have a great relationship with your endo. Pumping was largely T's decision, and *I* was uncomfortable. It is his body and his disease. After research, we supported him. His endo was totally onboard. I think if Jack is ready, your endo needs to support you. He works for you and his job is to provide support for Jack's health. You have more than demonstrated how awesome you are at managing Jack's diabetes.

If your endo is as awesome as he sounds, he should support your choice. You shouldn't have to beg or convince him either. A heartfelt conversation telling him you and Jack are ready should be more than enough. Whatever you decide, it should be your choice to make.

April