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Monday, January 3, 2011

Don't judge me

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.

37 comments:

  1. no judgement here!! I am not sure Im ready to do this either... Joshua is not even 2 so to think of all the things attached makes me scared.. We are looking at going to just get info...I dont know that I am ready to relearn everything again too!! Hugs to you and know I am not judging!!

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  2. No judgement coming from me friend. I think that is the beauty of all of us supporting each other...there are sooooo soooo many ways of dealing with and managing diabetes in our children's lives. What works for one family may not work for another. AND. That is OK. PERIOD.

    I am impressed that you are going in with an open mind. Enjoy learning about it...and see if it sounds like it is for you and Elise. How does she feel about it?

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  3. @ Reyna - I don't think she quite gets it, although she did say she wanted a pink one. Of course.

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  4. While I LOVE our pump and would never go back to shots, I totally understand your point. I think everyone has something that works for them and that is ok. On shots, it is much easier to see where the adjustments need to be made. For us, I wasn't so good with a strict schedule and the pump has allowed us that flexibility we didn't have without it. Pumping is a huge change for sure. Everyone has different issues they deal with too. In over a year and a half, we haven't encountered many problems from the pump you mentioned (only a couple sets pulled out cuz it was the end of their life and not sticky anymore, no bubbles, no occlusions, no ketones, no infections, etc)
    I think it is great that you are going to the pump class. Get all the info you can and decide what is best for YOU. Whatever you decide will be the right decision for you. And we all will support you no matter what!!!

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  5. Hey no judgement here sweetie. Everyone does things the way they need to do them. Whatever works for you and Elise and your family. I love that you are going with an open mind to the pump talk - that's what it's all about. And change is hard for everyone and letting go and well, about a million other things too.

    I will say, in my personal experience, G was dx'd when she was 6, so she really knew what was happening on so many levels. I had to wait for her to want a pump. It took 18 months. I was ready about a year into the diagnosis. All things in their own time and whenever everyone is ready. From my experience, the biggest thing it gave her is freedom and by age 7, when she was ready, she needed that.

    If you never pump a day in Elise's life, you are still am amazing mommy, pancreas and supporter of her. Pumps don't make any of us 'better parents.'

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  6. I think your secret is out! lol

    You do a fantastic job with her care - why on earth would you want to change. As the saying goes, if it ain't broke, don't fix it.

    Caleb was on NPH for the few months that he was on injections and it did work really, really well. The struggle I had was the schedule. We're on a pretty tight schedule with three young kids anyway, but even so, it was hard to manage to - particularly on holidays and vacation - and his regime provided no flexibility - he had to eat the same amount of carbs at the same time each day. If we stuck to injections, I'm sure we would have come up with and IC ratio - we were not doing that at the time though.

    The other problem we got into was night. Caleb would grow and insulin needs would fluctuate and we couldn't tailor the NPH properly. Pumping allowed us to address that nicely.

    That said, it's not all hugs and roses, as you know. On balance, we prefer it, but it doesn't mean it's the right for everyone all the time. There's something to be said for the way long lasting - even NPH - "soaks" stuff up.

    Okay - that was longer winded than I intended. No judging here - ever. :)

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  7. No judgement ever. Secret? Somedays I miss shots. I slept more cause we were never allowed to correct highs unless over 300 or had ketones. But he had terrible lows with lantus. So we switched. And for us this works. But no one knows whats better for a child than their mama! So whatever choice you make we support you. Xoxo

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  8. I totally get it. My son was 20 months at dx and were put on Lantus. I knew what to expect from it and really fought to NOT go to a pump. The unknown is scary. That being said, when he was 3 1/2 we gave it a try and I wouldn't go back unless he really wanted to. He tells me all the time how much better it is. I hated seeing something attached to him, but knowing how much more regular his schedule is now, I overlook it :) Just know that if you never decide to pump, that is fine. D is so individual and you are doing a spectacular job caring for your daughter. You should be very proud of yourself!

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  9. certainly no judgement here, friend! I think it is a deeply personal issue that each family has to deal with on their own. If the shots work for you then stick with it! You have to do what is best for you and Elise.

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  10. I'll be honest...if Isaac EVER says he wants to go back to MDI I will be all for it. I don't like the pump for any feature other than the small increments that it can bolus for. That's it. My husband has been on MDI for over 20 years with the majority of his A1C's in the 6's, he gave the pump a try and wasn't impressed.
    So, no judgement.
    But if you do choose to change I'll be here to support for sure :)

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  11. You already know how I feel about you and NPH right? Well, I'll say it again....YOU ARE AMAZING!!!

    I think you have Diabtes beat down with that NPH, and I wouldn't change it either! I didnt want Maddison on a pump for the same reasons, I FEAR change. I HATE change. I was SO freaking scared of switching to the pump it nearly caused a nervous breakdown! Of course, now we love it....for the most part....but sometimes I think shots are easier, and structured carb counts instead of "free eating" helps a TON on shots.

    I'm glad you confessed, because I think you will see WE are all amazed by YOU having NPH wrapped around your little finger. :)

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  12. You had to know that no one here would judge you for any decision you make with your daughter.
    It's nice; our D-OC buds listen and share but I've never been criticized.
    I think you're wise to go to the pump class. It makes sense to learn what's available, the same way you checked out preschools before choosing one.
    Whatever your decision, we're here to support you and your family.

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  13. I'm so new to all of this, just a few months in, and I didn't think I would really want to do deal with a pump either. Then, last night when we were visiting our friend whose daughter has one, she said she could actually program the pump to deliver insulin from her cell phone while her daughter was at school. That meant her mom wasn't going to school everyday anymore. That, so far, has been one of the best arguments I've heard for the pump. We homeschool so far, but if there comes a day that we don't, and our kids end up at a private school that doesn't have a full-time nurse, I bet we'll end up with a pump. Anyway, I'm still on a major learning curve.

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  14. I am a FORMER pump wearer myself, and while I learned a lot from my experience, I am not what could be euphemistically referred to as a "pump evangelist" who believes because a pump was the best thing for them or their child that it by definition must be best for everyone else, too. Given the tiny basal requirements for your daughter, I can't see a pump delivering much in the way of incremental improvement in glycemic control. It may make it easier to dose tiny meal dosages, for example, but beyond that, it's a choice, not a requirement for good glycemic management. You sound like you're doing a great job, don't let anyone tell you otherwise!

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  15. Makes complete sense! My parents completely regret getting me an insulin pump at the age of 9. It was much more difficult and too many problems came. I know that everyone is different but why change something that works now? If NPH works with you then why change it. Keep up the good work, they are great A1Cs!

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  16. No Judgement, sounds like you guys are doing a good job of taking care of your daughter the way things are. Who knows, maybe later on down the road you'll change your mind, or maybe you won't. We got a pump 6 months into diagnosis and I was on the fence about it too, but my girl wanted to try it, so we did. I almost threw in the towel during that first month or two, but now I can't imagine going back to those 5-7 shots a day. Good luck, you do what you feel most comfortable with.

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  17. I don't think there's one right answer for anything. Judging by her A1Cs, I'd say NPH is working for you. So until you feel there's a need for a pump, go with what you're comfortable with and what works for you.

    (P.S. Our first endo "didn't trust" diluted insulin, and yet wanted to make us wait a year for a pump. Our first 6 months on MDI with teeny tiny insulin needs were hellish. I'm glad we moved and got a new endo. I love the pump for Charlotte's needs now, but I wouldn't bat an eye if at some point she wanted to go back to MDI.)

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  18. Wow! You ARE even more amazing than I knew!! Certainly not judging you here. It is a very personal and individual decision. I was really nervous about switching Ally to the pump...I felt like we were just getting the MDI under control. But I love it and Ally loves it! Also remember that if you give pumping a try...you don't have to do it forever if you don't like it. (Shhh..don't tell the insurance company that will hopefully pay for the pump that I said that!)

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  19. I totally HEAR YA!! We are still on MDI but looking at pumping at our next appointment.
    It is something that I'm very nervous about...change.
    But we are looking into it too...we will see?!?!?

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  20. Hey...we're getting Adam's pump on Friday and I'm still not sure I'm ready for it. The "attached" thing is really getting to me.

    I can totally understand why you'd not want to switch right now - Elise was diagnosed early, and you've been able to control her diet and she's used to scheduled eating. Our issue is dealing with a 4 year old who, prior to being diagnosed 4 months ago, was used to eating pretty much WHATEVER he wanted WHENEVER he wanted and it has been soooo hard to control that. This is where a pump will be good for us, despite my nervousness about it.

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  21. I am right there with you Joanne. I feel the EXACT same way...and I feel like a bad mom for thinking it...but i can't help it. We are also going to be attending a pump class this month. our second time trying the first pump class actually. first time around Emma was too scared of it...but now she is actually ASKING for a pump...im scared, but i will follow your lead and go with an open mind...:o) good luck to you guys!!

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  22. I am SO BAD when it comes to D change. I SWORE I'd NEVER consider a CGM EVer again...and...she's been wearing one for 2 weeks. Not sure I like it. But we're trying it. Who knows what's next.

    NPH was a nightmare for us. But, then again, she had an endo who wanted to "streamline" all of the diabetes patients -- type 1/2/adults/kids -- just put them all together and give everyone the same orders. At 24 months of age, her breakfast ratio was 1:10 (TEN!!!) I swear I was sure I was going to GO CRAZY!!!!

    Anyway, you obviously know how to manage her. You obviously know what the heck you're doing! So, if you decide a pump isn't right, then it's not.

    Period.

    Cuz you're the mama.

    And you know best.

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  23. Okay, total judgement here....YOU'RE ONE AWESOMELY FANTASTIC D-MOM! Seriously, the lack of desire for a pump has no effect on that. You know what works for your family, you know what works for Elise. You're obviously doing a great job taking care of her with exactly what you're doing now. If you decide to get a pump for some of the benefits it offers, great. If you don't, great. When it comes down to it, you're going to do what's right for Elise and your family. Period!

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  24. I so get it Joanne. You will figure out if the pump is right for your family or not and I think going in with an open mind, even though you have your doubts, is admirable. I am feeling the same way about the CGM right now. I know so many of you swear by it but I just don't really feel excited to slap another device on Addison...
    Good luck!

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  25. You'll get a pump IF and WHEN your family is ready for it.

    We waited 18 months to get one and never looked back.

    At the time I was nervous too because I felt like I had to learn everything again. And I'm still learning. (I would still be trying to learn w/ MDI, I'm sure.)


    Go to the class. See what they have to say. Keep an open mind.

    You may decide yes. But you may decide no. You may decide that right now isn't the best time and you'll revisit the issue in a year or in two years. Maybe when she goes to school.

    The point is that you are going to make the decision that is right for you and your family given the information and circumstances AT THAT TIME.

    No judgment here :)

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  26. Hey, I've been diabetic for 25 years and I have NEVER had better control than when I was on NPH. I have even asked the doc to put me back on NPH, but she is hesitantand keeps saying the lantus is better. I don't know, I still get ows at night, so is onebetter than the other??We have to do what works for US. I am very very happy for all the people who love their pumps and CGM's, but I am comfortable with MDI and checking my levels a bazillion times every day. When I'm not, I'll rethink my decisions, again. But don't let the fact that other people do something different be what makes your decision.
    If you're comfortable and her numbers are pretty good....be thankful!! Good luck!

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  27. No judgment here, other than to say you do a fantastic job. I'm sure I did mention the pump in one of my previous comments but believe me I only mentioned it because I thought it would make your life easier, not more difficult. The pump is just an insulin delivery device; nothing magical about it, but for us so much easier. The A1cs you mention are awesome; don't think the pump can improve those. Just the ease of delivery, the ease of making minute changes, temp basals, etc. Endo at hospital where she was diagnosed used to insist on the Rapid D or needle sets so there is no troubleshooting in the beginning with those, no kinking, etc. Pump is harder is some ways, more work initially. You are not ready and doing so well you don't really need to pump. But I am glad you are keeping an open mind and going to pump class anyway. When or even if the time comes, you'll know. And it's good to be educated before that time comes, if it ever does. Don't think I could do as well as you are doing, even with the pump.

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  28. I'm just gonna say it... Who the hell told you that your doing your daughter a disservice? They need to be slapped. I hope you gave them a good "kiss my awesome A1C getting ass" kind of answer.


    I am not good with change either. It was a little easier for me because Justin gave me the go ahead. We were on NPH for 20 months with A1C in the 6's. However, we did have a lot of lows. Though they are better... we do still have them now. The pump is not magic... it is simply a tool designed to help.

    We have not had all the problems that you listed. Except last night Leighanna and Justin got in a "scuffle" and his site did get pulled out. Secretly it was a blessing because they both had to go to bed early for fighting ;)(hehe - me time).


    I went to pump class with my mind open and an attitude of... I can take it off and put it in the closet if I don't like it.

    Joanne, don't let ANYONE make you feel like you are not doing what is best for Elise. You are a kick ass D Mama! When the class is over...If you don't want... don't get it! Simple as that.

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  29. I'm newly diagnosed myself, and I don't think I want a pump. I don't mind the MDI. Maybe I'll consider it one day, but for now, I'm content. :) And I definitely don't think you're doing a disservice to your daughter. Whoever thinks that...well, previous posters have already voiced my opinion.

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  30. We moms can find so many things to feel guilty about. Diabetes just seems to pile it on thicker. But one thing I have learned over my 19 years of parenting, is ....just don't do it! (feed the guilt, that is). You know in your heart that you love your daughter and there is no ONE "right" way to parent or to manage Diabetes. We waited an extra year to pump because we were bringing a new baby into the house and knew it the change of pumping would require a lot of attention. So you are wise not to jump right in until you feel ready. And to affirm your decision, we have had more close calls with DKA because of pump problems than when on syringes.

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  31. Now I am afraid of saying "the wrong thing" after your cool video :) but you know my heart is in the right place, right? :)

    From a non-T1 place, I know what you mean about fearing change. The known quantity just always feels safer. I will tell you that both my brother and sister have never and do not use pumps. I think their doctors are kind of along the lines of if it's not broke, don't fix it," but everyone seems to think they are crazy for not making the switch. With my sister, I do think it is some of that what you said, about always having something on her...always...

    So even though I don't "understand," I do understand and think everything you are feeling and saying is totally normal!!!
    :)
    MJ

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  32. Now I am afraid of saying "the wrong thing" after your cool video :) but you know my heart is in the right place, right? :)

    From a non-T1 place, I know what you mean about fearing change. The known quantity just always feels safer. I will tell you that both my brother and sister have never and do not use pumps. I think their doctors are kind of along the lines of if it's not broke, don't fix it," but everyone seems to think they are crazy for not making the switch. With my sister, I do think it is some of that what you said, about always having something on her...always...

    So even though I don't "understand," I do understand and think everything you are feeling and saying is totally normal!!!
    :)
    MJ

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  33. No judgement here, either. My DD just switched to a pump in October, and while it's been good for us, I would never think anything of someone choosing a different method of dealing with their insulin needs. YDMV.

    That said, let me tell you a little secret: the first two weeks on the pump I hated the thing and seriously questioned if we'd done the right thing. Nobody warned us that the initial adjustment period can be rough. So... if you ever do decide to try a pump, just remember that it may not be great right away. (I mean that to be helpful, not to scare you away... hope it's coming out right!)

    You stick with what works for you- that's all that matters!

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  34. Wow, Joanne! . . . 34 responses?!?!?! This must have been one 'hot topic' that needed to be hashed out. See what putting yourself out there will do??? Make people talk and share and get things done. Nice job!

    As for me and my T1 we will stay with MDI until it no longer works for us. Period. When someone asks for my opinion I always preface it with; "What works for us ....." and end it with "Do what works for you . . "

    Choosing 'Joy' in 2011, Amy

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  35. Just found your blog. My dd was dx at 19 months old and is almost 9 now. She began pumping when she was 2 but chose to stop about 2 years ago. There are pors and cons to pumping as I am sure you know. I do think it can give a lot of flexibility especially with littler kids who are unpredictable in how much they eat or what they do. It can also give very small doses which is helpful. But you are right that a bad site throws extra variables into figuring out highs. My concern with travelling internationally would be can I find replacement supplies abroad. I would think this would be easier to do on MDI but I have never looked into it.
    I think there are two main things to ask yourself: is my current regime working for us control-wise (and it sounds like yours is; we never had A1Cs that good on NPH)? and is it working for us life-style wise (maybe less so??). You need to do what's right for your family and that will not necessarily be the same thing; your decision doesn't have to be once for all. If you do try to pump at some point, you nede to realize it will require a lot of tweaking initially and you should stick with it for awhile. Last thought is that I was very scared pre-pumping about just the change and technology of it and quickly realized that it was all not a big deal after all so don't let fera be the thing that holds you back. Good luck

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  36. Thanks for your comment on my blog. I forgot to say that you could consider other MDI options too. I know you said you started on NPH because it is able to be diluted, but maybe now your daughter's doses are high enough that she could more easily use lantus or levemir? I know NPH seems to be working for you control-wise. Fir us it wasa disaster. I can't imagine traveling, especially internationally, when my dd had to eat certain amounts at certain times. Levemir or lantus could give a little more flexibility without being a radical change.

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