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Tuesday, June 7, 2011

Don't judge me - repost

I wrote this earlier this year... I thought by now we'd be on a pump. But we're not. And to tell you the truth, I don't think my feelings have changed at all...
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I have a secret, and I feel the need to tell you. And when I do, I don't want you to judge me. I just need to get it out. Maybe because one day I'll look back and be able to see what an idiot I was. Here goes...

I don't want a pump for my daughter.

Whew... I said it. I feel better now. Maybe you're reading and re-reading the above statement; scratching your head and asking yourself what I've been smoking. Let me explain.

To do that, you might need a little background. Elise was only 12 months old at diagnosis, and we caught it VERY early. She was put on diluted Humalog and diluted Humalin (NPH). She was put on NPH because it is the only long-acting insulin you can dilute. Her daily doses were 2 units of diluted NPH at breakfast (no fast acting), and 1 unit of diluted Humalog at dinner. If you translate that into full strength, her carb ratio at dinner was 1:100. So you can see, she was on a pretty small amount of insulin at first. A pump was never offered as an option, and of course, we didn't know enough to ask.

So 2 1/2 years later, we're still on NPH as a long-acting insulin. I have had people tell me that it is a horrible insulin regimen. That it's archaic. That we're doing a disservice to our daughter. And yet, we're still using it. Why?

Because for us, it works. Elise's last 4 A1C's have been 7.1, 7.1, 6.6, and 7.0. Unless we're dealing with some unholy hell like an illness or growth spurt, her numbers typically range from 90 to about 200 during the day. I know what to expect from NPH. I know how to tweak it. I understand how it works and how to make it work for us. But, it is a very stress-inducing insulin, and there are days when I am so over it that it makes me cry.

And still I say I don't want a pump. So why? Why would I say something so dumb?

Because I don't want everything that comes WITH a pump. I don't want to deal with sites that get ripped out.

Or air bubbles in the tubing.

Or infections.

Or scar tissue.

Or bad sites.

Or a site that bleeds.

Or seeing yet ANOTHER thing attached to my daughter 24/7

Or any of the other problems I've read about that happens when you pump.

For us, trouble shooting a high BG is fairly simple... either her insulin to carb ratio has changed, we messed up on her carb count (something that rarely happens since we weigh everything she eats and use carb factors), or the insulin has gone bad.

Easy.

A pump involves way more trouble-shooting. Something I don't think my brain can deal with right now.

Having said all that... we are taking a pump class this Thursday. And I will go into it with an open mind, and really listen. I know there are a lot of positives about a pump. And maybe in a few months you'll hear ME ranting about how awesome it is.

Stranger things have happened.

Wanna know another secret? I'm not so good with change, and I think out of everything, that's what's bugging me the most.

10 comments:

  1. Hey, if it's not broke don't fix it! The decision to put my son on a pump was not one taken lightly, believe me. It's hard to take a step into the un-known. I used to be scared of all that same stuff. That fear is legitimate. IT works for US. We very rarely have an issue with it. A few bent cannulas, mommy forgetting the site change (oops), but all-in-all, no problems. To each his own.

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  2. Jo, if it works for you... that is all that matters! Isn't the goal to keep our kids healthy and happy? Does it really matter HOW we do it (in terms of pumps or MDI)? I don't think so. All that matters is that Elise is happy and healthy and that you are happy with your current treatment. Don't let anyone make you feel bad about that!

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  3. Jo Im not on a pump either because when I was dxed there was no such thing and frankly I do it the old fashioned way or archaic as some put it , but hey it works for me and every dr I have ever seen has been okay with my system yeah , maybe some dont like it , but it works for me end of story and I aint changin now .

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  4. I think you just have to do what works for you and Elise! I met a type 1 last year who was diagnosed about 3 years ago (I think) and he is still on MDI. I've told him how much I love the pump and his sis is even on the pump, but if MDI works for him, I'm not going to push or judge! I think in the DOC, our end result or goal is the same, but we all go about it in slightly different ways, and there's nothing wrong with that.

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  5. Ditto to what everyone else is saying. You're doing a great job with Elise, her A1Cs are great, she's growing, she's happy. It'd be a different story if you weren't keeping her A1Cs down or if she was fighting the injections, but it sounds like you're doing exactly what is best for your daughter and your lifestyle. Way to go on sticking with something that's getting you the results you want!

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  6. I completely understand your perspective. After nearly four years with diabetes, Jack is still on MDI. Part of the reason why relates to our insurance and the fact that we'd have to pay out of pocket for a pump. We're not about to part with $6,000 unless we're absolutely, positively sure it's the right thing for Jack. Part of it is exactly what you stated -- not wanting another device attached to him, not wanting the problems that come with a pump, knowing how to troubleshoot with MDI, Jack not minding shots at all, achieving good A1Cs and being resistant to change. However, Jack now wants a pump, and at this stage in the game, we think it would give him a bit more independence. So perhaps at the end of the year, when we're as close as we're going to get to hitting our insurance deductible, we might just go for it.

    Do what you feel is best, Jo! A pump is only another method to deliver insulin.

    Our endo has stated more than once that a pump is not necessary. With regards to MDI, he tells us all the time, "if it ain't broke, don't fix it!"

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  7. We feel the same way, although my son was just diagnosed 5 mos ago (at 3), but I personally want him to be the one to make the decision to have something attached to him 24/7. I'm anxious to hear/read how it goes for you!

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  8. As everyone else has said, if it works- it doesn't matter! Her A1C is great! So stick with what works. Maybe when she gets older she can decide for herself, but for now, don't feel guilty. you are doing an amazing job.

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  9. It's okay! There's no time limit as to when or if Elise goes on the pump. Up to you and then later, her. I suspect we would have done quite well on MDI until she hit puberty. By the time Elise hits puberty, God willing, SmartInsulin will be on the market and we will all be off pumps.

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  10. I think there are pros and cons to both sides...and it really is just a matter of what works best in your situation. I'm sure that even though Charlotte is pumping now, there will come a time that she wants a break and will go back to MDI. As long as its working for you and Elise is healthy and happy I don't think you should feel pressured to change.

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